Considering IVIG or my husband. He's very sick, especially with neurological symptoms. Can't do anything basically, not even talk to me.
Don't have insurance but willing to spend anything to save him. Considering IVIG and have couple of questions.
What is the best brand to get? Especially if want to start slow?
Is SQ a good option or not really?
Where would I buy it if not through insurance?
Any testing to do before starting IVIG?
Thanks!!!
Elena Posts: 5 | From Columbus, OH | Registered: Sep 2012
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
This is really expensive. Have you checked on the prices?
Before I would do something this expensive without insurance, I would make sure that everything else reasonable had been tried, including IV/IM for lyme and treatment for coinfections.
Don't know how long he has been treated, but you have not been registered very long. Can you give us some details?
Some people on the board have done IVIG so they will probably come along with info. Kinda doubt that any of them were paying out of pocket.
Posts: 2888 | From USA | Registered: Mar 2004
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Both my husband and I have CFS for many years. 2 months ago got positive on lyme on the new culture test (cultured it for 2 months). So really just starting out in the lyme community.
I am functioning better than him. I feel like he is losing a battle. His neurological symptoms are horrible. He can't read, write, watch tv. He can't talk to me or even listen to anyone. He is basically bed ridden and can't travel to see any LLMD. He is sensitive to vibration and even a 15 min car ride to our regular doctor could crash him badly...
We are considering putting PICC line but his inability to be touched is kinda hindering this. He won't survive the whole procedure of getting PICC line.
Considering possibility of starting oral antibiotics.
He just started on jernigan neuro toxin basic formula to start removing toxins.
I think toxins from lyme/mercury are overwhelming his body now not the actual bugs.
So we thought of possibility of doing IVIG to bring his immune system up a little and then start antibiotics.
My doctor will give me prescription. He just said go ahead and do research and buy it and he will administer it.
Doing my own research on antibiotics too so as to present all this info to our current doc. He is open to starting anything to save my husband's life.
So we have to check his immunoglobulin levels before starting IVIG?
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Most people who do IVIG do not start with it before doing antibiotics for some period of time. Seems like you have not started at the beginning but are jumping to the middle on this. And some people get better without IVIG.
You really need to get him to an experienced lyme doctor and not do this on your own or with a doc who doesn't know tickborne diseases.
IVIG is going to need a PICC, you know, or else getting stuck more frequently.
People in really bad shape, like your husband, need to start off slowly, because the herx will be too much for them on a normal dose of meds.
Why don't you at least do a phone appointment with a more experienced doctor to get advice on how to proceed? If you don't ask for treatment, maybe a doc will let you do this without appearing in person. Or if that can't be done, maybe your doctor could consult with a lyme doc. This would involve a lot of hand holding and might be too much to ask a lyme doc to do for free. They are very busy.
People have had experiences with IVIG that needed educated oversight.
Posts: 2888 | From USA | Registered: Mar 2004
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Def. check Imm levels!
-------------------- 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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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I am sorry you and your husband are so sick. It sounds like you were just diagnosed. It can take time to improve. I hope you are seeing a knowledgeable doctor. There is one in your state who comes highly recommended.
I get IVIG because of an immune deficiency. This is what it is for. I don't believe it works the way you think it might. As suggested above, your husband needs to have his levels checked. If his levels are off, he likely will need to have further immune testing done. It is a process.
As far as I know, if his levels are normal, he does not need it. My once-monthly infusion costs thousands of dollars. It is prescribed by a doctor. I believe insurance will cover it only if the testing shows immune deficiency. I don't know that it would help or be safe for someone who is not deficient.
I hope you can both start treatment soon.
Posts: 4682 | Registered: Oct 2000
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Do you have a copy of a recent CMP? Compr. metabolic panel? Showing globulin and A/G ratio?
I have asked and was not answered about the Globulin levels in a CMP. If they are low - is that a warning sign - ie check the Globulins further? Or the CMP Globulins not helpful in this regard.
If interested - read the thread I started this regard a year ago - Dec 18 2011. A search should find it.
FWIW - on IVIG my levels remain normal.
-------------------- 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
Frequent Contributor (5K+ posts)
Member # 13952
posted
Hi Panthere,
If your husband is that sick, you need to apply for SSDI (disability). Once he is approved for SSDI he would qualify for medicare too.
IVIG is not a treatment that you can self administer. You need to see a neuroligist or an immunologist for proper testing, evaluation, and treatment.
IVIG is a human blood product that is life saving for those of us that truly need it. I have a Severe primary immune deficiency and I would have no hope of suppressing these infections and living, no hope of a future without IVIG treatment.
These IIVIG treatments are very expensives, and they do have risks since they are derived from donated blood. A nurse must stay with you and monitor the infusions, no matter how experienced or comfortable you think you are, that is for safety.
If your husband doesn't have insurance right now, he may qualify for his states ins high risk pool. Some states allow you to join at anny time, some want you to have been denied ins and be without ins for 6mo.
I understand that you want to be well ASAP, yesterday. With lyme finding the right doctor and treatment can take time.
Hang in there
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