Archive | April, 2014

Update – IVIG Reaction, Blood Donors & A Sore Throat

26 Apr

 

blood donorsUpdate – IVIG Reaction, Blood Donors & A Sore Throat

After getting my second IVIG (gammagard) infusion last week I didn’t have the immediate bad reaction. I did however get some side effects starting on day 2 and I still have them tonight. I did get a slight migraine, head pressure and I could hear my blood rushing through my head for hours. My cognitive issues are worse so I am making up words more often since I cannot find the real words. My daily symptoms are 10x worse, my pain is more severe and I noticed my arthritis is much worse all over in every bone. I doubled my extended release morphine (MS Contin CR) to 180 mg per day (long acting pain killer) with 30 mg of Norco (breakthrough pain killer) and my medical marijuana edible and CBD oil but nothing is touching the pain or taking the edge off. A lot of tears of pain lately.

I am still waiting on my referral to be approved for my Ketamine infusions (for pain) at the pain center. The idiots denied my first referral that took forever to get then told me to resend a referral because they threw out the first one. I am also taking NSAIDS, Benadryl (for the IVIG reaction) and many other herbal pain killers daily with epsom baths. I have been much sicker and starting 3 days ago I have a swollen, painful throat now. I lost my voice yesterday. I thought it was strep throat again but it is not, this is different so I am not sure if this is from the IVIG or a bug from having family around me at Easter. I am usually in the house 24/7 and never around other people except my parents. I rarely go in public unless I need to get a prescription.

I would say the IVIG side effects (not bad reaction) are almost like having a flare or similar in ways to a herx. The bad reaction I had to the infusion, to be honest I would have literally killed myself if I had that pain for a week. My brain was so inflamed I couldn’t think, speak, breathe, move, see…etc. So luckily the second infusion only gave me side effects with no bad reaction so that’s a plus. I am doing a full dose (30 grams of gammagard) in 4 hours although I would prefer 6-8 hours next time.

I am pretty exhausted, I haven’t been sleeping well so I am sure I left out a lot of things that have been worse since the infusion. I have been on the verge of wanting to go to the ER but like I said before I have all of the same meds here at home that they would give me at the ER. The ER always treats me like I am just some freak that knows nothing so I hate when I have to go.

I also wanted to thank all of the healthy blood donors who are helping to save my life, my sister jewels’ life and all of the others who need blood, plasma…etc. I never donated blood because I always knew there were too many medical issues for me to feel good about giving my blood. Luckily I never did with having lyme. I always admired those who took the time to donate but I never knew one day I would need plasma from the blood being donated.

It takes 1000’s of different donors blood just to make one IVIG infusion. Hopefully there will not be a shortage on it one day because so many people depend on it. I need to do what I can to keep my numbers from going any lower and staying out of isolation. My sister is literally in a bubble and cannot come in contact with her own hubby and son. Without the donors and IVIG my sister may not be here today, she’s a fighter.

 

Side Note:

I hope all of my readers have a great weekend and maybe get to enjoy some sunshine. Whatever you do, do not give up! If you feel alone and depressed reach out to a friend or find a support group and make new friends. I love my spoonie family on IG/Twitter… they have been very supportive. I met some great people in support groups, one girl (my ex) that I love more than anything, one really best friend who is always there for me, and many others who have my back. If you have nobody around then I highly recommend getting on twitter or Instagram and look for others with illnesses. Don’t ever feel alone. Find the beauty in life, look around and when you find it smile. You are alive and breathing and remember someone always has it worse than you do. Take care friends.

 

 

 

 

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Debbie Gibson Is A Lymie

24 Apr

 

 

 

518201802-Debbie-Gibson-Battling-Lyme-Disease

 

 

Debbie Gibson Is A Lymie

 

In case you haven’t already heard the news…. Debbie Gibson (singer) went public about her lyme disease. I don’t have the energy to talk about this tonight so please visit an official article HERE

 

 

Or copy and paste this link:

http://abcnews.go.com/blogs/entertainment/2014/04/debbie-gibson-reveals-drastic-weight-loss-caused-by-lyme-disease/

 

 

 

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Doing Buhner Protocol Again

22 Apr

cryptolepis

 

Buhner Protocol

First off it has been 4-5 days since my IVIG and I am feeling much worse today. I don’t have energy to write much. I might not make sense, I have been slurring my words and making up new words all night. I feel like have another illness in my body such as the flu or a cold but I think it’s just the IVIG and my body is not adjusting yet.

I had a phone appointment with my LLMD last Friday and she wants me on a Buhner protocol again. She says most of these herbs will help with my oxygen, inflammation and coinfections (plus lyme). I have been on a few of these herbs before with no herx or no success and I took a high dose.

 

I will be using the following for now on top of my meds for mold and all my other meds/supps;

  • Sida Acuta 30-60 drops 2-3 x day
  • Bidens 1/4-1 tsp 3-6 x day
  • Cyrptolepis 1/4-1/2 tsp 2-3 x day
  • Red Root 20-90 drops 2-3 x day
  • Japanese Knotweed 1/4-1/2 tsp 2-3 x day
  • Cat’s Claw 1/4-1/2 tsp 2-3 day
  • Zeolite
  • Motherwort 10-30 drops 2-3 x day

 

 

 

Keep on keeping on spoonie family we can get through this.

 

 

 

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One Item Every Lymie Should Have

20 Apr

amazon

 

One Item Every Lymie Should Have

If I could recommend one piece of medical equipment every lymie should have, it would be the pulse ox . My Lyme Sister recommended it to me. If you have lyme you most likely have coinfections including Babesia which steals our oxygen. We also have symptoms of air-hunger with having lyme.

Being chronically ill and so fatigued all the time it may be that you have low oxygen or your heart is off. This device will give you your oxygen and pulse on one little machine you put on your finger tip. I didn’t buy the brand above but just showing an average good ones to get. There are some lemon brands so make sure to read reviews before you buy it.

 

 

 

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IVIG Day 3 – Delayed Side Effects

20 Apr

migraine-symptoms1

 

IVIG Day 3 – Delayed Side Effects

It is day 3 after my second IVIG infusion and the side effects have hit me. This isn’t the bad reaction I had the first time but more of just symptoms or worse symptoms than usual. Day two I felt inebriated and my mom was speaking to me and her words sounded backwards. I went outside to watch my little buddy (friend’s son) find eggs hidden for him and I ended up passing out and missed it all. That night I was feeling really weird.

Today is Easter, Day 3 and last night I sweated severely and soaked the bed (worse than usual babesia), then woke up with a migraine. This migraine was my usual migraine and not the aseptic meningitis I had during the first IVIG. The migraine lasted all day/evening and I woke up about 6pm with no appetite. I am still feeling worse so I need to sign off.

 

IVIG (Gammagard) Warnings

This medication may cause serious (rarely fatal) kidney problems. The risk is higher if you have kidney problems, diabetes, a serious blood infection (sepsis), a certain blood problem (paraproteinemia), or a severe loss of body fluids (dehydration), as well as if you are older than 65 years or are taking other drugs that may harm the kidneys (e.g., gentamicin).

This medication may also rarely cause serious blood clots (such as pulmonary embolism, stroke, heart attack, deep vein thrombosis). You may be at increased risk for blood clots if you are an older adult, are severely dehydrated, have a catheter in a vein close to your heart for administering medications, or have a history of blood clots, heart/blood vessel disease, heart failure, stroke, or if you are immobile (such as very long plane flights or bedridden). If you use estrogen-containing products, these may also increase your risk.

Before using this medication, discuss the risks and benefits and if you have any of these conditions, report them to your doctor or pharmacist. The risk of kidney problems and blood clots may be decreased by infusing this medication more slowly or by using a less concentrated form of this medication if available. Being adequately hydrated before receiving this medication may also help reduce these risks.

Get medical help right away if any of these side effects occur: sudden weight gain, swelling of the hands/ankles/feet, a change in the amount/color of urine, foamy/frothy urine, shortness of breath/rapid breathing, chest/jaw/left arm pain, unusual sweating, sudden dizziness/fainting, pain/swelling/warmth in the arm/leg, sudden/severe headache, slurred speech, weakness on one side of the body, sudden vision changes, or confusion.

 

IVIG (Gammagard) Side Effects

See also Warning section.

Flushing, headache, dizziness, chills, muscle cramps, back/joint pain, fever, nausea, or vomiting may occur. Tell your doctor or other health care professional immediately if any of these effects occur, persist, or worsen. Pain, redness, and swelling at the injection site may also occur. If these effects continue or become bothersome, tell your doctor.

Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.

Tell your doctor right away if you have any serious side effects, including: easy bleeding/bruising, fainting, fast/irregular heartbeat, unusual tiredness.

Rarely, this product may contain substances that could cause infections because it is made from human blood. Though the risk is very low due to careful screening of blood donors, discuss the risks and benefits with your doctor. Tell your doctor immediately if you develop any signs of infection such as persistent sore throat/fever, yellowing eyes/skin, or dark urine.

Treatment with this medication may rarely cause a serious inflammation of the brain (aseptic meningitis syndrome) several hours to 2 days after your treatment. Get medical help right away if you develop severe headache, stiff neck, drowsiness, high fever, sensitivity to light, eye pain, or severe nausea/vomiting.

Lung problems may rarely occur 1 to 6 hours after your treatment. You will be monitored closely for any lung problems after your treatment.

A very serious allergic reaction to this drug is rare. However, get medical help right away if you notice any symptoms of a serious allergic reaction, including: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing.

This is not a complete list of possible side effects. If you notice other effects not listed above, contact your doctor or pharmacist.

In the US –

Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

In Canada – Call your doctor for medical advice about side effects. You may report side effects to Health Canada at 1-866-234-2345.

 

 

Have better days……

 

 

 

 

 

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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.

 

 

 

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LLMD Phone Appt & IVIG Infusion Today

16 Apr

IVIG 2

 

LLMD Phone Appt & IVIG Infusion Today

Just a quick update. I haven’t been feeling well at all for the past 2 weeks. Feels like a flare but a little different so I’m not sure. All my symptoms are worse and I wasn’t able to leave the house to buy a gift for a friend until one night I forced myself to go. I was extra dizzy and got car sick as soon as we left the drive way. I was hoping to travel for the summer to meet friends but I do know if I can hold up. I haven’t traveled (flight) since 1996.

I have a follow-up appointment today with my doctor from GMG. We will go over blood results to see why I clot and also bleed out. She will be seeing how the pain meds are working and how I am doing on the meds (herx). I haven’t had any herxing from the coinfection meds or any supplements she gave me. I will also let her know my heart is under control now and back to a normal POTS range. She may be adding in some new meds but I can’t remember.

My home nurse called and said she could do a night time infusion since she knows I am a night owl (lymepire). So the infusion should last about 8 hours and she will be coming over at 4pm. I will be taking claratin, benadryl, tylenol, water with electrolytes before the infusion begins. I hope I don’t have the same bad reaction as last time that was a living hell and hurt my brain so bad. Wish me luck with round two.

 

As for all of you, I appreciate all of your feedback and support and I hope you all have someone supporting you as well. Never give up this fight, we will all make it to the top. Have a day and smile.

 

 

 

 

 

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