posted
Hi everyone. I am in need of some urgent help regarding IVIG treatment and qualifying through medicare.
Unfortunately, I don't have any diagnosable condition that qualifies me for the treatment (through Medicare); my Ig levels are normal as well as just about everything else the dr. has tested me for.
She's pretty good about finding loopholes to get her patients what they need but this time we're stuck.
The worst part is that my disease continues to progress with weight loss being the most urgent problem. Since my last infusion in July 2014 I've lost 8 lbs. I'm 5'5" and about 88lbs right now. I've entered into palliative care since this is quickly going to turn into a life-threatening issue.
The sad part is that I was receiving IG through private insurance that I lost last year. We saw improvement in many areas and my weight stabilized. My C4a level also dropped a ton and was almost in range.
From what i've read so far its nearly impossible to get IVig through medicare without a pretty solid diagnosis of something.
Even with a diagnosis it seems like an uphill battle. My weight loss continues and its only a matter of time before things take a really bad turn. If anyone has any ideas please let me know.
............................................
(breaking up the post for easier reading for many here)
-------------------- I have severe light sensitivity so please be patient as I have difficulty using a computer. Posts: 28 | From Los Angeles | Registered: Dec 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Breaking this post up for easier reading:
Hi everyone. I am in need of some urgent help regarding IVIG treatment and qualifying through medicare.
Unfortunately, I don't have any diagnosable condition that qualifies me for the treatment (through Medicare); my Ig levels are normal as well as just about everything else the dr. has tested me for.
She's pretty good about finding loopholes to get her patients what they need but this time we're stuck. The worst part is that my disease continues to progress with weight loss being the most urgent problem.
Since my last infusion in July 2014 I've lost 8 lbs. I'm 5'5" and about 88lbs right now. I've entered into palliative care since this is quickly going to turn into a life-threatening issue.
The sad part is that I was receiving IG through private insurance that I lost last year.
We saw improvement in many areas and my weight stabilized. My C4a level also dropped a ton and was almost in range.
From what i've read so far its nearly impossible to get IVig through medicare without a pretty solid diagnosis of something. Even with a diagnosis it seems like an uphill battle.
My weight loss continues and its only a matter of time before things take a really bad turn. If anyone has any ideas please let me know.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I believe people with sjogrens have neuropathy. IVIg helps with that.
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posted
I had a year of ivig approved by medicare. I had a diagnosis of chronic imflammatory demylinating polyneurapathy, an autoimmune disease. I also had high anticardo lipids.
all assumed to be caused by chronkc lyme, bartonella and babesia. Theresa
Posts: 479 | From nj | Registered: Nov 2000
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posted
I don't have any of those. It seems like I would need something to show in my tests in order to qualify.
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Under what Dx did you previously get IVIG?
Do you suspect an immune deficiency?
Have you had titers tested - see if your antibodies are "fighters"? Then vaccine challenge?
How many grams did you get when on IVIG?
-------------------- 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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posted
I'm not sure how my Dr previously got the IVIg. I had private insurance so I think there's more wiggle room for her to come up with a diagnosis.,
I've never had titers checked but I think that's because they are going to be normal. My doctor is very knowledgeable but I think medicare is more restrictive.
I had 21g/no for nearly a year then 42g for the last two months. We saw improvement in symptoms as well as weight gain which is my primary concern.
I just don't think I have a diagnosable condition that medicare accepts.
-------------------- I have severe light sensitivity so please be patient as I have difficulty using a computer. Posts: 28 | From Los Angeles | Registered: Dec 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hotsun, break your posts up into very short paragraphs as I did with your first post.
Otherwise, there are many on here that will be unable to read what you wrote.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Jordana
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posted
If you have Lyme you probably have a positive ANA.
That can get you diagnosed with all kinds of "seronegative" autoimmune diseases.
In a pinch, you can be dx'd with a "seronegative" autoimmune disease even without a positive ANA.
Posts: 2057 | From Florida | Registered: Feb 2015
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I will try to Google these or bring them up to my Dr.
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Jordana
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posted
ANA means anti nuclear antibodies.
It shows up positive when there is any autoimmune problem in the body.
Although sometimes a person can have no antibodies they can find and still have autoimmune disease.
That's called "seronegative" because it can't be found in the blood.
There are many diagnoses that there's no hard proof for.
If you need IVIG you probably do have some kind of autoimmunity problem.
Posts: 2057 | From Florida | Registered: Feb 2015
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
IVIG is expensive - but in case you happen to be financially able - could the doctor Rx it - and you infuse yourself? SubQ?
Not use insurance?
Most brands wholesale at about $100/gram - retail close to $200/gram. Perhaps the doctor could negotiate close to retail price with a special pharmacy?
I infuse (inject) SubQ the cheapest way possible. SubQ. No nurse or pump or anything like that. I infuse 1-2 grams a few times a week using just a butterfly needle and a syringe. Supplies to do it that way probably $50/month.
Research "rapid push" and Dr. Shapiro for more info if interested. (note: I push the meds in slowly).
-------------------- 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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posted
I probably couldn't afford that but I'd prefer subq to iv.
I'll look it up anyway though.
-------------------- I have severe light sensitivity so please be patient as I have difficulty using a computer. Posts: 28 | From Los Angeles | Registered: Dec 2015
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Jordana
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posted
You can also call the company that makes your brand and try to get a compassionate use rx. Or see if your doctor will.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
I have heard of that actually. I have been researching it online.
Most of the information is in regards to experimental, non fda approved medication.
Is there a program for compassionate use of FDA approved meds?
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Jordana
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posted
This is non-fda approved since there is no diagnosis. They would call it "off-label" access.
Google compassionate use off label FDA.
Posts: 2057 | From Florida | Registered: Feb 2015
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-------------------- I have severe light sensitivity so please be patient as I have difficulty using a computer. Posts: 28 | From Los Angeles | Registered: Dec 2015
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quote:Originally posted by Jordana: If you have Lyme you probably have a positive ANA.
That can get you diagnosed with all kinds of "seronegative" autoimmune diseases.
In a pinch, you can be dx'd with a "seronegative" autoimmune disease even without a positive ANA.
So I went to hematologist and this is what he found:
Low white blood cells which could indicate an autoimmune problem.
Elevated Ana 1: 160 in aspeckled pattern(?)
RNP antibodies elevated at 27 units
Lupus anticoagulant borderline elevated at 42 seconds.
Don't know what all of this means but I'm hoping it's a good sign.
He says I need a Rheumatologist but I heard they are not recommended for people with lyme, but I need the IVIG soon. What do I do?
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Jordana
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posted
Get the rheumy appointment ASAP, go there and explain your situation. Sounds like you could easily get treatment for lupus; one off label treatment for lupus is IVIG.
You don't have to take any other treatment from the rheumatologist if you don't want to.
Posts: 2057 | From Florida | Registered: Feb 2015
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I asked the hematologist to refer me to someone but he seems to be sitting on it.
He also has the results. I don't have a copy.
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quote:Originally posted by Jordana: Get the rheumy appointment ASAP, go there and explain your situation. Sounds like you could easily get treatment for lupus; one off label treatment for lupus is IVIG.
You don't have to take any other treatment from the rheumatologist if you don't want to.
Just got back from the palliative care doctor. I showed him the results from the hematologist showing that I have elevated ana and low c3 and c4 which is indicative of lupus. I asked him about IVIG treatment for that and he said no you don't need that. He said it's very difficult to get it that I need to consider other options. Unfortunately it's not looking very good :-(
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Jordana
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posted
The palliative care doctor is not a rheumatologist, who would be the one that would most often prescribe IVIG.
Other options, like what, from the PC doc? Morphine and hospice care? Screw him, hotsun .Go see the rheumy.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
He has referred me to a rheumatologist and I am also on a waiting list for another one in LA who is apparently the expert on lupus. I'm keeping my fingers crossed.
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Jordana
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posted
Another way to get an IVIG prescription is through the dx of hypogammaglobinemia.
There are two tests. One tests the sufficiency of your cells to make IG antibodies - IGG, IGM, IGE and IGA. If all of those are normal you can still have this condition by one of the "fractions"of those gammaglobulins being insufficient.
These are simple blood tests and you can get them through quest or labcorp. If you haven't done this then ask the rheumy for them. If the rheumatologist won't get you your IVIG, next stop is the immunologist, who can order that testing for you.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Mine are normal except for igm which is high.
My other IG levels have been checked a few times and they are always normal.
What is hypogammaglobinemia?
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Jordana
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posted
It means not enough immunoglobulin.
If you haven't gotten the fractionated test -- you could still be missing one of the *parts* of IGG and that could be why IVIG helps.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
I will ask about this. Thank you, you gave been extremely helpful and you give me hope
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Jordana
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posted
Here's a short web page about IgG subclass deficiency. If you want to click around through it to "treatments"; one of them is IVIG.
sammy
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Member # 13952
posted
For an IgG subclass to be considered deficient, insurance companies require that the level be measured at least 2 standard deviations below what is considered to be the lowest end of the normal range.
Meaning, you cannot have a slightly low number. It must be significantly the below the range.
Another test that they like to use is to administer the pneumococcal vaccine. Then they test to see if your body builds and keeps the proper immunity to it. If you never build immunity or lose it quickly, then that can support your diagnosis of immune deficiency.
For Primary Immune Disorders, like CVID and IgG subclass deficiencies, Medicare has very VERY strict rules for qualifying for IVIG.
If you are concerned about an immune deficiency, then it would be best to see an immunologist for proper diagnosis and treatment. They will also be very familiar with the Medicare requirements for IVIG and can help you get authorization if you have a condition that qualifies.
As you wait for the appointment with the immunologist, you could also go ahead with your scheduled appointment with the rheumatologist. Then you can rule out any possible severe autoimmune disorders that may possibly need treated.
You could also contact Medicare to find out what autoimmune disorders that they will cover with IVIG. When I last looked, their list of immune deficiencies and other conditions including autoimmune disorders was not very long.
Good luck to you.
Posts: 5237 | From here | Registered: Nov 2007
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posted
I believe all of my levels are normal, that is where my LLMD got stuck.
I am showing autoimmune activity for lupus but IVIg is rarely used for that. I'd have to have a solid case which may be doubtful.
The funny thing about all of this is that when I was in contact with the infusion pharmacy they were practically begging me for a diagnosis.
They would ask me if there was anything at all in my medical records to get me qualified for the IVIG.
It seems as if they were willing to do whatever they could to get me on that medication. You would think that if IVIG was in such short supply they would be more judicious with their decisions.
At the end of the day I think it's all about finding a doctor who's willing to fight for you. Unfortunately every time I bring up the topic of IVIG the doctor ignores me or seems uninterested.
I know it's tough to get but when a patient is severely underweight you would think a Dr would have more urgency.
I feel like I'm just fighting a losing battle.
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susank
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posted
Hotsun - are you on Medicare?
I opted for a Medicare Advantage plan last year when my employer insurance ended.
Oddly enough - I think that some Advantage plans are perhaps not as strict as original Medicare.
Sammy - regarding the two SD's. I thought it was two SD's below the mean. And/or that the reference ranges given includes the two SD's. ie anything below the ref. range is 2 SD's off.
Hotsun - has your doctor done the basic titer test against Strep Pn? I never did the challenge. But.....the titer test my doctor ran showed my Strep. Pn. titers were non protective. All but three were below normal range. I am not sure what this means exactly - assuming I had been exposed to Strep Pn - which most people would be, right?
Curious also - do you have a copy of a chemistry panel that shows your Globulin and A/G ratio?
Those were normal for me - and then they weren't - about the time I started showing Lyme symptoms.
I think that was a hint to a doctor to test total IGG and subs etc. On the CP my Globulins were low and my A/G ratio high.
They go into normal range when on IVIG/SCIG.
But if I am low on G's - have not infused enough the Globs get low and the A/G ration high again.
-------------------- 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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posted
I'm not exactly sure what this all means. She's run my IG levels several times and they are normal.
She never ran them.before the IVIg but its been over a 1.5 yrs and they have not gotten low.
I have regular medicare I think. Not sure what medicare advantage is or if its offered. I'm on disability.
Not sure what strep test this is.
I'm not sure either what diagnosis my LLMD had used to get the IVIg thru private insurance. I think she was just better able to manipulate the system since in had really good insurance.
It's harder to do that with medicare I'm sure
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posted
So I saw the rheumatologist today. Apparently the hematologist gave him the heads up that I had Lyme disease.
So the rheumatologist basically told me I had a lot of inflammation and probably some psychosocial issues that needed to be addressed.
He's going to coordinate with my therapist since I'm obviously crazy. In the meantime, no IVIG.
The general consensus appears to be that its only Covered through Medicare for immune deficiency. Guess I'm out of luck :-(
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
[QUOTE]Originally posted by sammy: For an IgG subclass to be considered deficient, insurance companies require that the level be measured at least 2 standard deviations below what is considered to be the lowest end of the normal range.
Meaning, you cannot have a slightly low number. It must be significantly the below the range.
Another test that they like to use is to administer the pneumococcal vaccine. Then they test to see if your body builds and keeps the proper immunity to it. If you never build immunity or lose it quickly, then that can support your diagnosis of immune deficiency.
For Primary Immune Disorders, like CVID and IgG subclass deficiencies, Medicare has very VERY strict rules for qualifying for IVIG.
If you are concerned about an immune deficiency, then it would be best to see an immunologist for proper diagnosis and treatment. They will also be very familiar with the Medicare requirements for IVIG and can help you get authorization if you have a condition that qualifies.
As you wait for the appointment with the immunologist, you could also go ahead with your scheduled appointment with the rheumatologist. Then you can rule out any possible severe autoimmune disorders that may possibly need treated.
You could also contact Medicare to find out what autoimmune disorders that they will cover with IVIG. When I last looked, their list of immune deficiencies and other conditions including autoimmune disorders was not very long.
Good luck to you. [/QUOTE
My doc is doing the pneumococcal vaccine to see if I qualify. You have to get the right tests done pre-vaccine and post-vaccine.
Posts: 1431 | From USA | Registered: Mar 2015
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posted
I heard that vaccine is dangerous and not recommended for people with Lyme.
But I don't know I hear so many different stories I'm not really sure what to think.
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Curious also - do you have a copy of a chemistry panel that shows your Globulin and A/G ratio?
Those were normal for me - and then they weren't - about the time I started showing Lyme symptoms.
I think that was a hint to a doctor to test total IGG and subs etc. On the CP my Globulins were low and my A/G ratio high.
They go into normal range when on IVIG/SCIG.
But if I am low on G's - have not infused enough the Globs get low and the A/G ration high again.
Does Lyme affect igg levels? I just took a look at my labs that were done 9 mo.apart and they did go lower.
They are still in range but all subclasses were lower, some more significantly than others.
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susank
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posted
Can you post your results and the lab you tested with. The same lab?
To add: what got lower?
From your Chem panel or total IGG and IGA and subs.
-------------------- 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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posted
The higher ones are 8/14. The lower ones are 4/15.
Sub 1 704 - 587
Sub 2 520 - 426
Sub 3 74 - 70
Sub 4 23.6 - 14.2
They are all still within range. Just lower.
These are from quest diagnostics.
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posted
[QUOTE]Originally posted by me: [QUOTE]Originally posted by sammy:
You could also contact Medicare to find out what autoimmune disorders that they will cover with IVIG. When I last looked, their list of immune deficiencies and other conditions including autoimmune disorders was not very long.
Good luck to you. [/QUOTE
So I just came across something interesting in a lyme forum. There's a woman who had her IVIG approved through Medicare / medical for idiopathic peripheral neuropathy.
Here's the kicker: her tests and emg showed little to nothing but somehow her neurologist got it approved.
After a bit of detective work I found this woman and got in touch with her. She gave me all the details of her doctors and what tests were run.
She said her tests showed little to nothing but her doctors assured her they would get her approved. This was January 2014 and she still infusing.
One more thing: I've had some of these tests done and mine show abnormalities (see this thread).
So now I'm like WTF? I called the infusion pharmacy and they can't tell you what diagnosis medicare covers but they didn't say there were only a limited number of diagnosis for IVIG.
What they did say was that certain parts of Medicare (A, B, D) cover certain diagnosis for the drug. I'm more than a little confused.
My general perception is this: in the world of Lymae a diagnosis seems irrelevant; its who diagnosis you and how willing they are to risk themselves getting you what you need that matters.
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