susank
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Member # 22150
posted
It went fine. I did not premed. But took Ativan and slept through most of it with sister there as "guardian". 30 grams over six hours. I feel like "h" every day - today no better or worse. I had taken to this doctor a stack of old lab tests/results. They noticed that end of 2006 my GP had tested my Immunoglobulin levels. Subnormal IGG and low IGA. I had overlooked that as well as apparently every doctor I took the results to. Not that I even would have known what it was or the importance. I remember my GP saying I needed to see a hematologist and rheumy. Whatever, no other doctor thought to test for ID's or follow up with further tests this regard - until now - almost four years later. I started feeling really sick summer 2006 and went to ER Oct/Nov 2006. I have endured four years of "h" and treatment is probably too little too late. Wonder what caused what - LD/Bart pushed me into CVID or CVID got to point to allow LD/Bart to "bust loose"?
-------------------- 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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troutscout
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posted
Think....babesia on this one as the hidden infection
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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sammy
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Member # 13952
posted
Susan, I hope that everything continues to go well with your treatments and that this therapy will be the key to your recovery. Please keep us updated on your progress. I'm personally interested because I may need IVIG therapy too.
Posts: 5237 | From here | Registered: Nov 2007
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IVIG and IV antibiotics brought my husband back from the abyss. Don't be surprised if you herx from the IVIG. The few couple of months were rough for my husband but after that he stopped reacting other than feeling a little off for a couple of days.
He has been off all antibiotics now for over 9 months and is just on IVIG. I don't think IVIG alone would have worked as well as we saw specific improvement with certain antibiotics especially Flagyl.
Posts: 984 | From San Diego | Registered: Nov 2006
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susank
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posted
Tks. I'm feeling a bit worse. Heat wave does not help. One can really herx from IVIG? How and why? I also have Rx for Zithro but not taking it. I cannot imagine taking the two together. Thoughts please. One of my worse symptoms all along has been dryness ie eyes/mouth. Seems worse since the IVIG. Also sensitive to everything and that all worse as well. Smells in particular. weird - day after infusion I blew my nose as usual with toilet paper and had bad reaction to the paper. Like I had inhaled something very toxic. Day of infusion - left arm - two places would not keep the cath. It stayed ok in my right arm (elbow) then had to go to bathroom and while there something happened - and had to stop that site - vein blew - don't know. Finally we found place where cath would work ie top of right hand. There it remained - removed for bathroom break. I drank water but don't understand. Except the usual - water seems to go right through me. Sister went with me to restroom and could not believe how much/long I urinated. Sorry if TMI. Sister retains water - I appear to do the opposite. I think I need to do something to help retain water - for everyday life and for infusions. I am not dehydrated per bloodwork. Just weird that I have dry eyes/mouth (burning) etc - and again water goes right through me - and often. Often like more goes out that comes in. Obviously not good - and not good for infusions. Thoughts? Lastly, when veins "blow"/collapse/whatever ie hpw long before they repair themselves. Tks all help. I am in very deep despair.
-------------------- 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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Pinelady
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Member # 18524
posted
Are you replacing electrolytes?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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sammy
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Member # 13952
posted
Have you tried drinking Gatorade or Pedialyte, basically any rehydration/electrolyte solution, instead of plain water? It might be worth a try. I would also try to drink more before and during the infusion.
When you have your next IV placed, ask the nurse to secure it well with tape. Sometimes all it takes is a small jostle and the catheter slips out. So stabilize that area (try not to move it more than you have too) and use lots of tape or coban to secure the line.
Some veins are just smaller and more fragile, they cannot support IV's for long, nothing you can do about that. But being dehydrated can make your veins collapse more easily so this is another reason to try to hydrate well before the infusion.
If the nurse has trouble finding a vein ask for a warm compress, warm blanket, or warm wash cloth (you get the idea, something warm) to hold over your arm and hand for a couple minutes. Try to relax. This always helps. It makes the blood vessels dilate, easier for the nurse to see and feel and insert the IV.
You might also want to talk with your doctor about premedicating to prevent the allergic type reactions.
Hugs, I hope your next infusion goes more smoothly.
Posts: 5237 | From here | Registered: Nov 2007
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susank
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Member # 22150
posted
Tks kind replies. I was thinking about electrolytes- (sp)ie Gatorade but always so nauseous/sensitive not sure if could manage it. Pedialyte - an option I had not thought of. Whatever I think I want salt - not sugar - and flavorless. Yes, I am tired of all this weirdness. I weigh next to nothing now. I did not premed with Benadryl because of its drying effects. But the other day with TP issue it was so bad I almost took one. Are there any non-drying alternatives? Thanks again so much. Oh, again TMI re: TP -but perhaps I have been sensitive to it otherwise for some time - not just nose blowing. TP allergy can seemingly present as yeast/UTI?
-------------------- 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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Member # 13952
posted
Pedialyte comes dye free and flavor free so that might be a good option for you.
Why no sugar? You'll have to keep it in mind. Sipping on something with a small amount of sugar may help. Like when you come out of surgery, you feel better after some Coke (or Sprite) and bites of crackers.
I'm not sure how drying one dose of Benadryl would be. It is not long acting only about 4-6hrs so it would barely carry you through the infusion. You'll have to ask your doctor to find out what would be the best option for you.
Have you tried artificial tears for your dry eyes? I like Refresh brand "tears" when my eyes get dry/irritated from my contacts. Sipping on something, chewing gum or candy might help relieve the mouth symptoms. You can find candies with xylitol instead of sugar.
Susan, I'm not trying to be bossy, just sharing ideas. Take care and good luck with your next infusion.
Posts: 5237 | From here | Registered: Nov 2007
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sammy
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posted
I just remembered, there is an old antihistamine called meclizine. It is primarily used for treating vertigo and nausea now. I wonder if it might work to treat your nausea and prevent the allergic symptoms at the same time. Just another option to ask your doctor about. It is generic so cheap as an RX and it's sold over the counter as "Bonine".
Posts: 5237 | From here | Registered: Nov 2007
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Pinelady
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posted
Either sounds good but just try a pinch of benedryl to start. A whole dose knocks me out for hours.
I have found just simple cold medicine helps for the flagyl jitters/twitches I still get from it...
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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susank
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Member # 22150
posted
Could anyone explain IVIG in regards to IGA and subclass levels? My IGA total was in normal range but one subclass was subnormal. I understand one has to be careful which brand to use in regards to IGA and/or anti-A antibodies? I was given Carimmune. Also, IVIG by itself is supposed to help with LD? How? Or is it best to take IVIG with Abx? Or do IVIG for weeks/months then add Abx?
-------------------- 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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Rumigirl
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posted
susank,
Usually you are supposed to premedicate with both Benedryl and tylenol. I just started IVIG last week, and only took one Benedryl,
because anything more than that would knock me out! Or, if another antihistamine is better for you, ask your doctor about that.
On the dryness issue and urinating too much: you may need Florinef, which makes you retain sodium, and therefore raises you blood pressure and you don't urinate all your electrolytes out.
It's common for people with Lyme to need it. Ask your LLMD about it. Usually, you need a potassium supplement with the Florinef, as it can knock out your potassium.
There are different approaches to the issue of IVIG and abx, ie, stagger the two, or simultaneously. But the side-effects of the
IVIG can be rough sometimes, so it is probably better to see how you react before you add in the abx. Otherwise, you may get clobbered!
Good healing to you! As you know, it's a process, and it often gets worse before it gets better. It requires A LOT of patience.
Posts: 3771 | From around | Registered: Mar 2008
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susank
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posted
Have placed call to doctor's office. Since the IVIG my eyes/mouth so much worse (dryness). I just want to die. Have had dry eyes/mouth for four years. Sjogren's tests negative. LD/Bart probably positive. What could be going on? Did the IVIG ramp up my immune system to attack itself/me and make things worse?
-------------------- 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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CD57
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posted
What's the latest on this? How are you guys feeling?
Posts: 3528 | From US | Registered: Apr 2007
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Tracy9
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Member # 7521
posted
We have an IVIG group on www.lymefriends.org if you are not already a member of it.
I don't think IVIG makes you herx, but it has some very nasty side effects. They don't always hit until a day or two afterward. They can be very flulike, which can resemble a herx, but they are not herxing at all.
Rumigirl and I are both going through IVIG, both have had two rounds of it. I go for round 3 on Monday. It is literally saving my life. But the side effects are BRUTAL. However they are lessening with each round. I had some IVIG previously in January and one treatment in March. Now I am going two days, every two weeks.
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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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
CD57 - I have only had one IVIG treatment. Too early to tell anything. I have not felt anything positive. My already dry eyes/mouth still worse but no one can explain why. Doc had rescinded orders for me for further IVIG - until I was able to get message through to office/lab that I had been given Carimune i/o Gammagard/Gammunex. I am pretty sure I will try IVIG again soon - probably Gammunex. I feel barely alive and cannot live like this - so have no choice but to try it again. Firstly for the recent Dx of CVID - secondly hoping it will do something against LD/Bart - which I do not have pos. Dx for. Wonder - doing IVIG - one cannot test for things like LD/Bart due to the donor antibodies????? Anyway, the side effects have been the weird reaction to toilet paper when nose blowing - and the added dryness. I found that pretty horrific but they seem to be side effects no one else has seem to have had/documented. The side effects most people have I did not have and I did not premed.
-------------------- 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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