Pocono Lyme
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I was getting blood work every 6 months until recently. The hospital changed from Gammagard to Octagam in January.
The hospital has new ownership.
I had a decrease in my total IgG by 200 points and also now low again in two of the subclasses which were finally low normal.
Now I am getting checked every 3 months.
I used to have an increase in symptoms for about 3 days or so but that got less and less after about a year or so.
When I hit low normal, it wasn't bad at all. Just a low grade temp for a day or so.
I am feeling worse since my numbers dropped.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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sammy
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I'm supposed to get CBC & CMP with total IgG level drawn every 3months. This is done immediately before my next dose of IVIG so we can try to get an accurate trough.
I just restarted my IVIG treatments at a very low dose. I didn't feel any different until 3 days after the infusion. Then I got a bad flu. Not sure if this was a herx reaction or a virus. I had fevers 102+, severe body aches, bone & joint pain, headaches, and extreme fatigue for about 5 days. I was so sick I could hardly stay awake, my body just wanted me to sleep.
That IVIG infusion was on 4/15 and I'm just now recovering from the extreme fatigue and excessive sleepiness. I hope that wasn't a herx and it doesn't happen again every 4 wks!
I personally think that it was a virus because it was so bad. Guess we'll see...
Usual herx symptoms for me from IVIG only lasted for a couple days after the infusion. And they were not as severe. I would get a Migraine (That was severe but treatable) and flue like symptoms but no fevers.
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Sammi
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Pocono Lyme, thanks for your reply. I had to switch to a hospital infusion center and they changed brands also. I am surprised they can do this.
I am sorry the Octagam is affecting your levels and how you feel. Can you go back on Gammagard?
I have not been on the infusions for a year yet. Some months I get a huge increase in Lyme and Babs symptoms in addition to feeling crummy for three days from the infusion. Not fun!
I have yet to get blood-work done. I guess I have to schedule it myself.
I hope you can switch back to Gammagard since it was helping you.
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Sammi
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Thanks sammy. It makes sense to wait to have the blood-work done right before the infusion for the most accurate results. I would have thought my immunologist would call to tell me it needs to be done.
I am sorry you have been so sick since the infusion. Do you think it could be because you had to stop them for several months? After some infusions, I get really intense herx symptoms. I guess it makes sense if the IVIG is helping the body recognize things better. I was extremely ill after the one at the end of April. I understand your frustrations!
I hope you don't get so sick after your next infusion.
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sammy
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Thanks Sammi! I've been feeling better over this past week. It is a much welcomed relief.
I know it was the IVIG that has given me this little break.
I had felt terrible being off the IVIG from Jan-April. I was constantly being knocked down by one opportunistic infection after another and never really getting better in between. I could not fight them off.
Since I've been off the IVIG for so long, it's hard to tell whether I got a virus after my last (first!!!) infusion or if it was a strong herx that my body was finally able to fight the Lyme and Co's.
I'm so excited to have my next IVIG infusion on Monday. Hopefully all will go well and if I do herx that the reaction will be a little less severe!
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Pocono Lyme
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Sammi, You're welcome. I am also surprised that they take on that authority themselves without consulting the ordering physician.
I get my next infusion Monday and will ask about the Gammagard again. I asked the last time and showed them my labs. I was told that this is what the hospital is using.
I would have to prove it with multiple labs and have the doctor write specifically for Gammagard then.
I would suspect my levels would be near zero by then. If I'm told the same thing Monday, I will just stop getting the infusions.
Sammy did add an important point about getting your labs right before your infusion to get an accurate trough.
It would be good for you to get labs every few months to monitor your response.
I'm glad you got your IVIG back Sammy and that you are finally feeling better. I hope you continue to feel better and better.
Good luck on Monday and the days following.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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Tracy9
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Maybe every 6 months? I'm not really sure. He did it monthly for the first 2 years but now not as much. I don't notice a herx reaction from IVIG. I'm so glad you are back on it! YAY!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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Maybe every 6 months? I'm not really sure. He did it monthly for the first 2 years but now not as much. I don't notice a herx reaction from IVIG. I'm so glad you are back on it! YAY!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Sammi
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sammy, I am so glad you are feeling better! How did your infusion go on Monday? Are you herxing from it? If so, I hope it is not as severe as the last one.
I called my immunologist's office today and set up to have the blood work done right before my infusion on Wednesday. Thanks for the advice about when to do it. Do levels typically normalize as a result of getting the infusions?
This is my first blood draw even though I have been going for several months. I will be interested to see what my levels are especially since brands were changed.
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Sammi
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Pocono Lyme, how did your infusion go?
I am sure that hospital infusion centers can get any meds that patients need. Can your doctor intervene? There has to be a way to get the brand that works for you, so you don't have to stop the infusions.
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Sammi
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Thanks Tracy9. I am glad you don't herx from the IVIG. I wish I didn't!
I will get blood work done right before my infusion next week.
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Pocono Lyme
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Sammi,
My infusion went well thank you. I don't get the same reaction as I did with the Gammagard.
I used to get a low grade fever, dizzy and a bit tired. The fatigue got less and less as my levels had increased.
With the new stuff, no difference at all. I see my LLMD next week and this will be the main topic of discussion I'm sure.
I'm glad you're getting blood work so you can keep an eye on progress. Hopefully, your numbers will be really good.
Hopefully you won't feel as bad after your infusion. But! For me it was a good sign that it was helping.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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Sammi
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Pocono Lyme, I am glad you will see your Lyme doctor this week. Hopefully you can go back to what was working.
I hope my numbers will be good too. They should be in the normal range if the IVIG is working, right? I wish I would have had the levels checked when I was on the other brand to see if there is any difference.
I figured if it is causing me to herx that it is working, but it is working too well! I think I have been deficient a very long time and now that I am getting the infusions my immune system is recognizing all these problems! I am hoping it will lessen over time and soon.
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susank
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Poco - which brand was better for you - Gammagard or Octagam?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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sammy
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Hi Sammi, your IgG levels should rise up into the low normal range with IVIG treatment.
Of course they will be highest right after infusion and lowest right before your next infusion. The lowest point is your trough. You want your trough to at least be normal so that your body is covered at all times throughout the month.
If your trough is at the lower end of normal and you still get frequent opportunistic infections, your doc may need to raise your dose.
I think that it is probably a good thing that you herx after the infusions because you know that your immune system is getting what it needs to work well.
My body didn't react at all to my IVIG infusion last week. I think that it just got used up right away. When I had my trough tested it was way low, like I wasn't treating at all.
I'm looking forward to getting started with my new RX. So far it hasn't been approved or processed by the ins co so that is still a prayer need.
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susank
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Sammy - so glad you are back on IVIG. I have prayed for you daily. I actually feel worse on SubQ than IV - and I cannot understand why.
My body does not seem to "catabolize" (?) the Gamma rapidly like yours does. Maybe my body prefers the lower levels.
ie I am: ~550 off IVIG ~750 on 10 grams ~950 on 20 grams
I was infused every three weeks. Levels checked approx every two months day of/pre infusion.
I handled the IV infusion very well - only premeds Tylenol. The next day I would have a post IVIG "hangover" but doable. The next days better.
On SubQ GG-L I am getting headaches during the infusions. Days after I feel worse than after IVIG. I have had to hydrate much more than I ever did for IVIG to stave (?) off killer headaches. Only to realize how much more pain and fatigued and depressed I am on SCIG - adjusted dose of 36 grams/month ie 9 grams/week.
I don't know what my levels are on SCIG - hopefully will find out this week when seeing a different doctor.
I don't want to give up on SubQ - but also cannot continue to feel as awful as I have since switching to it.
The bad feeling does not feel like a Lyme herx. Feelsd very much like Gamma side effects.
How could I possibly handle IV better than SubQ?
Lyme related? (other than herx) or what?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Pocono Lyme
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Sammi,
Your levels should be up. It took two years for me to hit low normal.
LLMD said he's seeing it all the time where hospitals are administering different brands.
He said it depends on availability and of course the big factor $$$$. Whatever they get cheaper.
He increased it and will get blood work next month and go from there.
Susan, I noticed a reaction with the Gammagard and no reaction whatsoever with the Octagam. My first infusion with the Octagam, I looked at the bottles and all three filled with foam.
I always noticed some bubbles on top of the solution but never a whole bottle of foam even after empty.
I mentioned this and the pharmacist said it depended on the detergent? Must've been scrubbing bubbles!
The next times, no foam.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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Sammi
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Thanks for the info sammy. One more question, can the IVIG affect normal blood work? I am wondering if I should get my monthly blood work done before the infusion also.
I am glad you think it is good that the infusions are making me herx. I just wish they were not so intense.
No wonder you did not react to the last infusion since your levels are so low. I continue to pray for you to have the proper dose covered. I hope this happens soon so you can get back on track.
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Sammi
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Pocono Lyme, your levels must have been really low if it took two years of IVIG to get into the normal range.
Isn't it terrible hospitals just switch brands? Do they even call the doctor to let them know? I wish I would have had blood work done when I was on the first brand to see if it was better than this one. Too much stuff to deal with!
I hope the dose increase helps you.
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Pocono Lyme
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Hi Sammi. My levels were really low. At first it upset me that my first LLMD didn't address it but oh well.
It was discovered in 2005. I even went to an immunologist locally and he said there was no sense even checking my immune system for another 5 years. That was probably 4 or 5 years ago.
The hospitals do switch and no they don't notify the doctor.
I can understand you wishing you had blood work previously but don't beat yourself up. If/when they switch brands, you don't have control over it nor do the doctors.
It is waaay too much to deal with. It's not just IVIG, not just Lyme, ... Lyme; the gift that keeps on giving.
I hope the increase helps too. Thanks. I get most of my blood work at the same time prior to IVIG just to save another trip/stick.
I don't know of any effects IVIG would have on other labs.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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posted
Where do you go to get IVIG infusions? My SIL number is VERY low. I believe in the 300's or 400's.
What things can cause low number? She has not tested for Lyme.
Thanks, -LAXlover
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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Sammi
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Pocono Lyme, why would the immunologist say not to even check your levels for another five years when they were already low? I think we all have to be our own doctors!
Ha! I also say that Lyme is the gift that keeps giving!
I got my immune blood work and my monthly blood work done right before the infusion. This saves me a trip to the lab, so I am going to do this monthly. And I got the results for most of it before I left!
My IgG level is in the low normal range. I went back and checked what the level was before I started the infusions and it was slightly higher!
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Sammi
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quote:Originally posted by LAXlover: Where do you go to get IVIG infusions? My SIL number is VERY low. I believe in the 300's or 400's.
What things can cause low number? She has not tested for Lyme.
Thanks, -LAXlover
LAXlover, your sister-in-law should be evaluated by an immunologist and have further testing done. Does she get sick a lot?
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Pocono Lyme
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Sammi, The only thing I can think of as far as the immunologist not addressing my immune system was to avoid a potential hassle with the insurance company. Poor excuse if that's what it was.
On another note, he wouldn't do allergy desensitization on me either.
A friend also had him refuse her aspirin desensitization. He's the only medical allergist in the area.
Aspirin desensitization requires a hospital setting, ICU, for two days. She was recently diagnosed with A. Fib.
With her medical history, aspirin would be the drug of choice for her.
Needless to say, I won't be seeing him again.
Sammi, Now it's really making me wonder if switching brands IS causing a drop in our totals!
I'm going to look into the subQ and most likely will then be able to get my Gammagard back.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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YES, she is sick ALL THE TIME! She is constantly on abx for sinus infection and sinus infection. This has been going on for literally years! Her allergist just diagnosed her with something but I had never heard of it. She is on vacation but I'll call her and get back to you with what they said she has.
Thanks, LAXlover
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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They have told her it's Primary Autoimmune Deficiency Disorder.
Her IGG was 380. They gave her the (sp) Pneumonovax Vaccine shot and that increased it to 420. Because this number improved a little bit, she was turned down for help at Johns Hopkins for a special IGG treatment of some sort.
She said that only 250,000 people in USA with this.
I'd love to be able to offer suggestions to boost her IGG but I really know nothing about this stuff.
Any suggestions?
-LAXlover
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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