Read about some who had to take it for a very long time to feel benefits. And some who even did worse on it. So how was Ivig for you?
Posted by racer (Member # 30438) on :
I was on it for the last year - I could not see any improvement for my neuropathy (painful hands & feet) nor for my head tremor, fatigue or twitching.
I stopped because my doctor had to stop practicing and I can not find another doctor to prescribe it. I think it is a good thing now, since I will find out (the hard way) if it was really helping or not, if I find myself declining. My former doctor said that it was primarily to prevent further damage.
At least my finances will have a chance to recover.
racer
Posted by hopingandpraying (Member # 9256) on :
My son has been receiving IVIG for 1 1/2 years now. Our LL Immunologist says people who have been ill for a long time with Lyme and co-infections take longer to see improvement. My son has been ill for 13 years now.
There have been some improvements, but my son still has chronic pain in his chest, sides, back, and arms (hurts more to be touched), as well as irregular sleep patterns and short-term memory problems.
Even though we have tried many different things over the years, we have not addressed treating parasites yet, but are seriously considering it. See 'glm1111' posts about this subject who is very knowledgeable and has started a new post, "Parasite Warriors Support Thread" to help.
As we say, what works for one person doesn't necessarily work for another.
Posted by CD57 (Member # 11749) on :
Does it actually help to kill these bugs themselves? That is what I would like to know.
Posted by tick battler (Member # 21113) on :
hopingandpraying - I would strongly urge you to see someone who does kinesiology. The muscle testing and EDS testing have been more helpful than anything in healing our family. The parasites are a huge part of lyme/coinfections. My kids all herxed like crazy with parasite treatment and then had improvement. It really affects the nervous system and brain. When my kids decline, it is often due to parasites.
sickmate - have you done any parasite treatment? My nervous system was really affected when our well water became contaminated with water-born parasites.
Best, tickbattler
Posted by hopingandpraying (Member # 9256) on :
CD57 -IVIG is not a Lyme treatment, per se. It is an immune-system booster.
My son developed an auto-immune condition because of Lyme and co-infections as well as having other problems which warranted treatment with IVIG. This was determined by a LL Immunologist who was referred to us by our LLMD.
tick battler - Thanks for the suggestion. I think we did muscle testing and EDS in the past. I am still in the process of researching parasite treatment.
Posted by glm1111 (Member # 16556) on :
I had 2 years of IVIG tx after my head, chest and pelvis went completely numb. Previously, I had very bad nerve pain. I also had 4yrs of abx incl 6 mos of IV Rocephin.
The IVIG may have helped slightly but it didn't go after the parasites I later realized I was LOADED with. Everything pictured on www.lymephotos.com came out of me after I added salt/c to herbal antiparasitics.
Mindboggling!! I would highly suggest to everyone on this board to treat for parasites.
I really think it's the missing link for those that are still chronically ill after long term abx tx. Google parasite symptoms and check out the current Parasite Warriors thread.
Gael
Posted by Pocono Lyme (Member # 5939) on :
I'm into my third year of IVIG. I couldn't feel my feet and had no reflex on the right and minimal on the left.
I can now feel my feet. Not completely back to normal yet but much much better. I also had an all over body numbness.
Felt like I had an inch or so of something insulating my skin. I could feel the pressure of a touch but not the feel of it.
It does take a long time. I finally recently reached low normal on my total IgG and 3 out of 4 of the subclasses.
Posted by CD57 (Member # 11749) on :
Wow Pocono. Did you treat Lyme and co's while doing this?
Posted by Pocono Lyme (Member # 5939) on :
CD57,
I had heavy duty treatment for lyme and co's before and during.
My first LLMD found my low IgGs in 2005. I was checked frequently but they never came up despite heavy treatment.
My second LLMD offered IVIG but I declined at that time as I couldn't handle one more thing.
My third LLMD (ID Doc)in 2010 saw my numbers and my condition and sent me out with orders for a PICC line, IVIG, IV Doxy and orals.
Posted by CD57 (Member # 11749) on :
Wow. did you treat for babs and bart etc? did you respond to tx once you started the IVIG, but not before?
Posted by Pocono Lyme (Member # 5939) on :
All of it plus heavy metal chelation.
I did get some improvement with the initial lyme and co treatment. Mostly from babs treatment.
I went from bed bound to chair bound 90% of the time after 2 1/2+ years with the first LLMD.
The second LLMD brought me further but still no quality of life and very symptomatic.
Once I started the IVIG, it knocked me for days. That got less and less. Then I could tell when I was due for another infusion. I'd be really listless.
It did make a difference for me as far as responding to treatment.
Now treating adrenal fatigue and hypothyroidism ("normal" labs).
Posted by CD57 (Member # 11749) on :
Hmm, how interesting. What did you do for babs do you remember?
I'm so glad it's made a difference in responding to treatment. How did that manifest?
Posted by Pocono Lyme (Member # 5939) on :
My first round for babs was the typical Mepron/Zith which took care of the teeth chattering chills despite being near the wood stove and 80+ degrees. Actually did skin damage due to being too close and not feeling.
The dose of Mepron had to be doubled after a few weeks as the chills started again.
Mepron was followed by Malarone. Over the years, I did pretty much all other meds.. Alinia, Quinine, Coartem, Clindamycin, Larium.
How I was able to tell that the IVIG made a difference was that I had done so much bart and lyme treatment prior yet some symptoms wouldn't budge.
I did some of the same treatment (actually lower dose of one of the meds) with/after IVIG and symptoms improved. One big one was balance. My PCP couldn't believe it.
My prior visit, I would obviously fall if not assisted. The next time I saw him, I walked unassisted and he felt comfortable enough to have me do the drunk test etc.. I did fine.
Posted by sickmate (Member # 31502) on :
Gael and Tickbattler, thanks for your parasite advise.
I am already trying Salt/C. I take one table spoon of each yet and find the C much easier than the Salt. But I dont have any reaction from it yet. How to go on? Where do I find a short "How to do it"?
Regarding other parasite treatment I considered Humaworm, but read on their website that they dont ship any longer to any country in the European Union (where I live).
Also started Artemisia annua after some llmds told me to but still unsure which bug it is supposed to kill.
PoconoLyme, for how long did you take Ivig and when did you start to feel improvement?