IVIG Round 2 – #WPIW

19 Apr

IVIG day 2

IVIG Round 2 – #WPIW

It’s World Primary Immunodeficiency Week (WPIW) coming up show your awareness. I recently found out I have been primary immunodeficient all my life. I thought maybe Lyme caused my immune to be weak but my immune was so weak it allowed lyme and every other disease to multiply inside me over the years.

Day 2 of IVIG (Gammagard) and I tried a different approach. This time before the IV infusion I took Claratin, Benadryl, Ketofin, doubled my morphine to 60mg, took 25mg of Norco, took cortef, and drank plenty of electrolyte water. The infusion was supposed to last 8 hours. I told my home nurse to slow the drip rate and override the pump so it was extend the infusion to 8 hours versus 4 hours that gave me the bad reaction the first time (read it here). For some reason the infusion was over in only 4 hours.

I didn’t have any side effects or reaction to the plasma this time. I felt like my usual hurting self that day so I didn’t notice any increase in symptoms. That night I soaked the bed in sweat which I usually do with my Babesia but I haven’t soaked the bed in a while I am killing off the Babesia. I think it was from the IVIG. I also had stomach cramps. Later the next day when I woke up I had a slight headache, very dizzy and tipping over, slurring speech, couldn’t understand any words said to me…. I was out of it. I am still feeling that way so I am off to bed right now.


I will catch up on comments soon, sorry guys. But I am here thinking of you all. Stay Strong.






2 Responses to “IVIG Round 2 – #WPIW”

  1. Greg Hawkins, S.J., Pharm.D., M.S. April 19, 2014 at 11:53 pm #

    If question too intrusive, please disregard. I am a DXed Chronic Lyme sufferer (bad, many symptoms, like yourself) and I would like to know how (I hope I frame this right, not tying to be smart-ass) you afford all treatments. I am just scratching the surface of “disabilty (humiliating)” and have had some flacid oral treatments, symtomatological treatments (beta-blockers, alpha blockers, ACE inhibitor/HCTZ, Lithium and Trazodone, but nothing for pain, save tons aspirin and some lesser used NSAIDS. I cannot take it anymore. I am a former Jesuit Social Worker (Lyme too incapacitating) , 46 and have not paid SS in about 10 year period (vows), but grew up on ranch – worked – well, worked all my life.

    Any suggestions on how to initiate SSDI (I think I read you have done?) to get medicare.
    -Don’t even know how to start. Legal very vague. The only thing I know for certain from attorney – rest anecdotal and own study, still confused – I have 2 grad degrees! – is that I must “extinguish/use/rundown my unemployment.” Evidently, the torture I have endured by making money (to support myself post “retirement” was “foolish.” I do not know what the hell to do? I will pay you for your time. I cannot get any cogent answers! THEN I would really like to see if I could be properly treated as I fantasize about practicing/being productive once again. This is such an unfortunate disease as so few take serious.

    You may bill me. I really need help.

    Thank you, in advance, and Happy Easter,

    Greg Hawkins, S.J., Emeritus

    • 49er Bryan April 21, 2014 at 5:30 pm #

      Hi Greg, fortunately I had a good job right before becoming disabled so I was able to save up some savings rainy day funds. I blew through that money paying for all of the oop costs. Luckily I received disability SS income 3 years after medically retiring. It is tough and I live with my parents so I know this isn’t an option for many. I suggest using al-Mart pharmacy they seem to be the cheapest and some of my RX such as heart meds are only $2 (w/ Medicare Part D Blue Cross mid cost plan).

      As for SSDI I can try to lead you the right direction. I started by myself and went to the CA gov web site and filled out the long application process. I can’t recall every step but I remember writing a lot of forms out even with cramped hands they want you to do it if you can versus another power of attorney. **Tip only fill out form of doctors you know/think will back you up in court or on paper, do not list all doctors because the one doctor that won’t back you is the one they will believe. I was denied a couple of time (this is common) they say if your head can still move you can still work. Don’t let it intimidate you. I decided 3rd time to go with AllSup. They do all of the phone calls for you and they are the middle man for any questions. So you won’t deal directly with SS which is a good thing since they are rude and never answer. So I suggest an attorney if you can afford the 25% fee. AllSup will interview you via phone call and let you know if you qualify or if your case is worth go forward with. They need at least 10 good work years and usually they look for recent jobs but I know some people who rarely worked and they got SSDI. So I am not familiar with how that works, I had about 16 years of work in when I retired. Allsup helped get me qualified and I had to see a psych paid for by SSDI before getting qualified. I got 3 years back pay and Medicare comes automatically 3 years after you become disabled and win SSDI. You will need to choose the best medicare plan for you and part d plan …etc. If anything you can apply for Medicaid in the meantime through your state, your city may also have it’s own program so call a local health and welfare office. Here it is called CMSP (city) and Medi-cal (state). You will only be able to go to the free clinic with medicaid. You may also see about getting welfare and food stamps at the same office. There are programs in each state and city that differ so you will need to call. I wish you luck. Hope I was helpful I don;t feel so great. Links below:

      AllSup is the company I used as my attorney, they will do all the work for you and help you with every question. You only pay for their service if you win your case and you pay max 25% of income coming back to you for disability.

      The official site to sign up for benefits. Fill out the forms they will have links on the web site.


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