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» LymeNet Flash » Questions and Discussion » Medical Questions » I am DOING BETTER -- Thx to immune globulin infusions

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Author Topic: I am DOING BETTER -- Thx to immune globulin infusions
cottonbrain
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Member # 13769

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Hi all,
Many of you know I've been on this board a very long time. I have had Lyme for about 25 years. You may not have seen me on this board in several months -- because I have been busy improving.

Please note: I am NOT recovered. But I have experienced huge improvements in cognition and motivation; my horrific and frequent migraines are almost completely gone, and my neuropathic pain and tingling is greatly reduced.

areas of improvement:
-Migraines (amazing improvement)
- mental stamina -- greatly improved (2-5 hrs per day are 'good')
- neuropathic pain in hands - almost gone now
- scalp and skin issues - greatly improved
- joint pain in hands - greatly improved
- motivation -- WOW -- greatly improved
-cognition -- another wow! -( as long as I am not too fatigued)
- reading and writing -- greatly improved
- sleep - better on some days

All these improvements are due to the Immune Globulin Infusions I have received over the past year. I do these under the care of an immunologist and my LLMD. The results have been more than I ever hoped for.

In addition, my LLMD has me on low doses of clindamycin and trimethoprim. I take a few vitamins and folate, and that is all.

I am not cured. I still have lots of symptoms, but my life is bearable now. Here are problems I still fight every day:
-fatigue and post-exertional malaise
- Very High EBV titers
- tendonits (from Factive)
-cognitive issues (I still have problems, though improved a LOT)
- shortness of breath
- frequent daily headaches (usually not migraines.)
- rare migraines (3-4 in last six months versus 36-48 in same
period before IGg)
- mild neuropathic tingling
- mild joint pain
- mild / rare neuropathic pain
+ more stuff I can't remember right now

Immune Globulin treatment is very expensive. Also, you must be tested for an Immune Deficiency in order to receive therapy. Most doctors do not know how to test for this or are unaware that it is an issue.

It is not a cure. But if your immunde deficient it may save your life by protecting you from infections other than Lyme.

Here is the best website to learn more about Immune Deficiecies.
http://primaryimmune.org/about-primary-immunodeficiencies/relevant-info/laboratory-tests/

Be wary of some of the Immune Deficiency 'Forums' -- I've found that some of them are really just advertisements disguised as forums.

I still have a long way to go on my healing journey, but I want everyone to know about immune deficiencies; if you have had Lyme a long time and aren't getting better, I highly recommend you get tested.

[ 01-31-2017, 11:44 AM: Message edited by: cottonbrain ]

Posts: 1168 | From USA | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
jsnyde2
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Congrats. That is great news
Posts: 351 | From La Crosse, WI | Registered: Sep 2005  |  IP: Logged | Report this post to a Moderator
cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769

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thx, jsnyde! I hope this info can help others.

I still have lots of problems but my quality of life is so much better now.

Posts: 1168 | From USA | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
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IVIG ?

Glad you got tested and got help! Keep going!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94476 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769

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thx, tutu!

I do the SUBQ -- at home. SQIG. Very manageable.

Posts: 1168 | From USA | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Great!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94476 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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cottonbrain,

I am experiencing the same results as you. So very thankful.

Posts: 2078 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Marnie
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IgG and macrophages - a great very easty to understand explanation:

"How macros tell friend from foe

Because it is very important that these killing machines not accidentally attack our own cells (“friendly fire”), they are equipped with a system for distinguishing “self” from “other.”

It’s an ID check, not unlike like police use when they inspect a driver’s license at a routine traffic stop.

First the macrophage sends out a “cell extension,” a long protoplasmic arm that wraps around potential targets (which are often identified by a cloak of sticky IgG antibodies), putting them into a strong “headlock.”

The arm then contracts a little, pulling the intruder closer, in order to be able to “frisk” it. (Like a cop grabbing a fleeing suspect.)

“Self”-cells have a molecular surface protein (their “drivers license”) that tells the macrophage, “Friend here; please let go of me.”

The macrophage responds by switching off the headlock, allowing the self cell to move on.

Foreign cells, i.e., those without the protein “license,” suffer the ignominious fate of being not just apprehended, but also summarily eaten alive. No ticket, no trial, no judge, no jury; this is raw cellular vigilante justice."

http://gcmaf.timsmithmd.com/book/book/4/all/#ch-53

Unfortunately the macrophages are unable to complete their job due to missing GcMAF - an activating factor.

So there is more to getting well. IgG is a start.

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qkcam
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glad you are doing better. I have a dr that wants me to give the IV IGG a try.
i recently found out i have that "mold " gene and some mold in my apartment. I am wondering if the IV igg would help with the mold illness in addition to the lyme. do you have any thoughts or experience with this?

i did flunk the pneuma vaccine so i definitely have immune disorder.
thank you

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Bartenderbonnie
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I m sorry I can not help you with the mold question.

I have been busy with other broken things in my body(bladder,liver,gallbladder,sinuses).. I haven't been able to address the broken things in my house.

But that will be next on my list. I hope someone will have the answer. Good luck with the IVIG.

Posts: 2078 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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Really struggling the past 3 weeks due to new tick bite, bedridden, total exhaustion, wide spread uncontrollable pain.

Had my IVIG treatment this morning.

Blood pressure low. Nurse started my I.V. and took pressure again. She stopped treatment and asked if I felt dizzy. I said I always feel dizzy. She suggested fluids. Wait 30 minutes.

Blood pressure still low. She called my doctor for guidance. Wait 30 minutes, take pressure. Finally came up alittle. Started and finished treatment. So wiped out. Went to bed.

1 hour later, holy smokes ! Energy back, headache gone, pain gone,

Made beef bone broth in crockpot. Made roasted red peppers with garlic in olive oil. Walked the dogs. Took garbage out. Got in shower and shaved my beasty hairy legs.

Absolutely incredible. It feels like one of the donors took viagra or amphetamines. Oh how I wish this lasts till next month ! ! !

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TF
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Wow, Bonnie! That is great !!!!!!
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garnet10
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quote:
Originally posted by cottonbrain:
Hi all,
Many of you know I've been on this board a very long time. I have had Lyme for about 25 years. You may not have seen me on this board in several months -- because I have been busy improving.

Please note: I am NOT recovered. But I have experienced huge improvements in cognition and motivation; my horrific and frequent migraines are almost completely gone, and my neuropathic pain and tingling is greatly reduced.

areas of improvement:
-Migraines (amazing improvement)
- mental stamina -- greatly improved (2-5 hrs per day are 'good')
- neuropathic pain in hands - almost gone now
- scalp and skin issues - greatly improved
- joint pain in hands - greatly improved
- motivation -- WOW -- greatly improved
-cognition -- another wow! -( as long as I am not too fatigued)
- reading and writing -- greatly improved
- sleep - better on some days

All these improvements are due to the Immune Globulin Infusions I have received over the past year. I do these under the care of an immunologist and my LLMD. The results have been more than I ever hoped for.

In addition, my LLMD has me on low doses of clindamycin and trimethoprim. I take a few vitamins and folate, and that is all.

I am not cured. I still have lots of symptoms, but my life is bearable now. Here are problems I still fight every day:
-fatigue and post-exertional malaise
- Very High EBV titers
- tendonits (from Factive)
-cognitive issues (I still have problems, though improved a LOT)
- shortness of breath
- frequent daily headaches (usually not migraines.)
- rare migraines (3-4 in last six months versus 36-48 in same
period before IGg)
- mild neuropathic tingling
- mild joint pain
- mild / rare neuropathic pain
+ more stuff I can't remember right now

Immune Globulin treatment is very expensive. Also, you must be tested for an Immune Deficiency in order to receive therapy. Most doctors do not know how to test for this or are unaware that it is an issue.

It is not a cure. But if your immunde deficient it may save your life by protecting you from infections other than Lyme.

Here is the best website to learn more about Immune Deficiecies.
http://primaryimmune.org/about-primary-immunodeficiencies/relevant-info/laboratory-tests/

Be wary of some of the Immune Deficiency 'Forums' -- I've found that some of them are really just advertisements disguised as forums.

I still have a long way to go on my healing journey, but I want everyone to know about immune deficiencies; if you have had Lyme a long time and aren't getting better, I highly recommend you get tested.

cottonbrain, my doc also suggested IVIG, but it would entail being vaccinated with Pneumovax and then retesting antibody levels.

What was your immune deficiency?

How much does the IVIG cost per month?

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lightfoot
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Glad for your improvements, cottonbrain!!!!

I will be starting IVIG in the fall. Who knew? I had no idea these deficiencies were part of the Lyme/Co picture in my case.

Yes, it is expensive but if you have the deficiencies it may be covered by insurance, mine will be covered by Medicare.

--------------------
Healing Smiles.....lightfoot [Smile] [Smile] [Smile]

Posts: 6488 | From CO | Registered: May 2002  |  IP: Logged | Report this post to a Moderator
   

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