I still don’t feel confident enough to go to four 30g/300ml infusions per month so for now I am doing one per month. I am on year one or two of a four year course of human plasma.
Every Wednesday in the middle of each month my nurse comes over to my house to infuse me. So I get to sit in the comfort of my home and do the infusion since I get too car sick to go to an infusion center. The IVIG makes me very drowsy and sleepy during the infusion. I’m usually nodding off and not sure what my nurse is saying most of the time.
This infusion went well and took about 4-5 hour for a 30g/300ml bottle of gmmgard (brand of human plasma) and a 250ml saline bag. I took all my pre-meds and hydrated as much as I could at 8am since I’m not a morning person and that is during my bedtime. It would be like some who goes to bed at 9pm being woke up at midnight to get a 5 hour infusion then try to stay awake all night until 9pm the following day.
My veins weren’t being cooperative but better than other times. It took the nurse four needle pokes in four different areas/veins to get a good one. I can no longer use my left arm due to RSD (RSD is one of the most severe pains in the world). So we only have my right arm to work with. He tried a vein in the middle of my arm but the vein lead to nowhere like it was only a tributary so I felt the flush of cold saline only go up a few inches then stop and swell up as if the vein was blocked.
The next was in my hand where that vein collapsed. The next was on my forearm and that vein rolled or vasospasmed. We had succees the fourth vein but it was on my elbow crease so I couldn’t move my arm even one inch or it would set of the pump alarm so I had to sit very still. The alarm controls the amount of fluid into the vein so it’s not to fast of an infusion. But if you bend your arm you bend the IV tubing which can close of the flow.
So far my brain is hurting and slightly inflamed but not too bad and no aseptic meningitis so far (knock on wood). Aseptic meningitis can be deadly and is not very fun, I’ve had it a few times and literally thought I would die. You can’t move, think, talk, breathe….etc. I’ve had fever and chills but I have that daily so I’m used to those symptoms and side effects. Other than that not too bad so far.
I hope all my readers are finding success with treatment, have someone to support you and I hope you are finding beauty in life itself although everything hurts. Stay strong warriors!
Not feeling well so I don’t have energy for a post but wanted to share that now Ashley Olsen has come out about her battle with Lyme and how she “thought she was dying”. One Article actually wrote the truth that late stage Lyme is “incurable”. Usually they write that with 2 weeks of antibiotics you are “cured” of Lyme which is a false statement. Latest stage Lyme disease is horrible and hard to treat, the Lyme is resistant to all medication on most lymies (like myself) so we take maintenance doses of meds to keep Lyme at bay. Most lymies have early stage yet assume they have late stage and are not sure the differences. Early stage if caught early can be easier to treat since the Lyme may not be in cyst or biofilm form. I hope Ashley will fight along with us all and the truth keeps surfacing. I’m rambling because I don’t feel well after tinidazole which is a cyst buster. Have a great week lymies. Maybe Ashley and I can be friends or date lol. Getting my IVIG Wednesday.
I’m back on Tinidazole as I mentioned in a previous post. The thought between my Lyme doc and myself is that since my Lyme is nearly 33 years old and nothing seems to help, I should be on a maintenance dose at least to keep Lyme at bay. The only meds that seem to make me herx or give me die-off are Minocycline for the Lyme in my brain and Tinidazole which is a cyst buster. My Lyme is in cyst form or biofilm form which most late stage Lymies have. For that you need to take cyst or biofilm busters.
First night back on Tinidazole and instantly I felt it working. My face was burning all night in my cheeks and ears. My stomach was cramping and had more pain than normal. These pills always kick my butt. I’m on day two and 500mg later my face is burning, I’m feeling very slow, dizzied than usual and feeling like crap. But in the Lyme world that’s a good sign the meds are killing some parasites and bugs. Remember to always detox and get rid of the die-off and toxins built up.
That’s about all the energy I have I need to rest. Wishing you all a much better week! Stay strong!
I’m very exhausted so I will keep this short. I had my monthly full dose IVIG infusion last Wednesday with my home nurse. It really wiped me out again and I slept 14-16 hours that night/day after. I can barely make it through the infusion without wanted to fall asleep. It makes my CFS act up or something where while I’m talking to my nurse I’m dozing off.
I had only 3 pokes (2 spasm veins) before we had success in my right arm but we had issues in my left arm with my RSD bring back (posted the story earlier). I took my pre-meds amd hyper-hydrated an hour before the infusion. These steps are very important to anyone doing IVIG and if you need more info I have posted to the details on a previous post about IVIG. Go to the search bar on my blog and type in “IVIG” or “pre meds” and it should bring you to it.
So far my brain was swelling a little but not the full blown aseptic meningitis as usual. It seems to be going down a little now. But I am still really exhausted. That was my update. Not doing well but hanging in there. I hope you all are doing better and giving it all you’ve got! Have a better week.
For those who followed me for a long time you know of most or all of my illnesses or medical issues besides Lyme. I have been living with RSD for maybe 10-15 years now. If you are unfamiliar with RSD/CRPS then click the link on the bold text in this sentence to go to a page that explains it better. Basically it is one of the worst pains that is severe and can be on part or the whole body. I describe it as being burnt in a fire and your skin is very sensitive to touch and feels like a burn wound. It’s a nerve pain that no pain meds can touch unlike my other muscle, joint, nerve, arthritis and chronic pain.
I had my IVIG last Wednesday and when the doctor stuck the needle in my left arm it hurt so bad I teared up. It felt the the needle was heated up unti it was hot metal and then inserted into my vein (which spasmed and collapsed). I said “ouch that hurts bad and I usually don’t feel the needles”, my nurse looked at me funny. So we ended up putting the IV in my right arm.
Later that night the severe burning came back which is different than my usual daily pain from head to toe. That’s when I knew my RSD was back to being severe again. It had eased up after my discs in my neck (c-spine) had ruptured leaving my arms numb and tingling for years. The neuropathy in my arms helped relieve the RSD pain which is weird because nothing seems to relieve RSD pain. My pain started to be severe it seems after surgery on my left knee. The RSD pain is only on my left side of my body and starts at the top of my shoulder down to the calf muscle on my left leg.
The pain is very intense, nagging, radiating, burning, non-stop and nothing can touch your skin or it’s worse. Even my shirt and pajama bottoms (I wear daily) hurt the skin. My flannel soft sheets hurt the skin and even an Egyptian cotton sheet hurt the skin. Those with RSD are very uncomfortable and it is said to be the “worst pain in the world” amd they say many with RSD end up taking their own life and can’t deal with the pain.
I was hoping to get ketamine nasal spray to try but my doctor would not give it to me. I am still waiting to be approved for the ketamine infusions since I’ve already had one lower dose infusion that seemed to help some. I can tell the difference is my chronic severe pains versus the RSD pain because of the burning feeling as if you are literally on fire. You would think ice would help but no way!!! Ice made it hurt a lot worse.
Visit to LLMD
First let me start with a quick update; I’m still recouping from that car ride to the Lyme doctor. For those who are new, my doctor is about a 2 hour car ride through winding roads in wine country or 4 hours plus round trip depending on traffic. I know some travel much further but for me I am homebound and nearly bedridden again so leaving the house is very hard. My brain is still inflamed, I’m more lethargic than usual and can’t seem to get enough sleep although I’m skeeping 12 hours a day.
My LLMD says although many other doctors have given up on me or called me “too complicated” she says she’s not giving up on me “yet”. This visit was one of those forced visits so I can get the face-to-face to please the stupid pain meds law. But we also went over blood results. That test I posted I while back although it mentions cancer a lot when looking online, it’s an inflamation marker test kind of like the c4a. Mine was high but not very high, which is odd because my body is severely inflamed and in severe pain daily so I think those tests aren’t very accurate as to what we actually feel like.
She said she wants to help my brain inflamation and swelling but being a natural doctor she doesn’t like prescription meds as much. So she has me back on Chinese skullcap, quercetin and Curcumin. I asked for a migraine med but she didn’t seem to think any were helpful. I get migraines, cluster headaches and regular headaches daily but the migraines maybe 5 times a month. The brain swelling/pressure has been with me for 6 years. Sometimes it’s so severe I can’t even talk. I can tell the difference when I have aseptic meningitis versus the daily brain swelling or herx from the Minocycline in my brain. All are very painful and can cause one to want to end your life but I won’t give up guys/gals I promise.
She said although my Lyme is 32-33 years old (and I’ve been reinfected in 99′ & nearly died) that it is not responding to anything and therefore not treatable for a “cure” AKA remission. So I’m on what they call a maintenance dose of meds to keep Lyme calm. I was on Minocycline for the Lyme in my brain but will be adding cyst busters and biofilm busters again. She thinks the doxy and Mino are not enough and not reaching the Lyme since mine are in very old cyst form. I will also be on nystatin still for candida that never seems to go away. If you are a long time reader you know I had a severe case that went bad and is TMI.
I will also be taking Lyrica again but she put me on a low dose since I had side effects. The Lyrica is for my nerve pain and FMS. So I have pain meds for muscle, bone and now nerve pain again. For those wondering how you tell the difference? Nerve pain is the tingling, stinging, feeling of needles, numbness, nagging, shooting pain that comes and goes, sensitive skin, burning skin….etc. My worst pain was in my arms where my RSD was but since I had a few hernated discs explode in my neck (which is like hot lava under the skin) it caused my arms to become numb and have very little feeling to touch. I don’t feel needles in my upper arm anymore. I think it’s called radiculopathy.
I’m trying to recoup and save my energy for my IVIG infusion on Wednesday. I get worse brain swelling every infusion so it’s a love/hate relationship with IVIG.
I hope you all are fighting with everything you have and finding better days. Stay string my friends!
I will try to keep this clean but this new law has had me angry since it first took effect. I have spoken on this issue before but since recent issues occurred I want to touch base on it again. If you are not familiar with the law (I don’t know the actual name of it), it is the law that anyone on certain tier pain medication must see a doctor face-to-face every month or two for refills and take a drug urine test. So basically it makes us who actually need pain meds for a better quality of life feel like criminals.
What makes me so angry is the fact Lyme patients with anything Lyme related do not get those Lyme related things covered (medical visit, meds, treatment..). Those of us like me with latest-stage neuro Lyme who are bedridden and homebound must still be forced to go visit our doctor who prescribes these pain meds versus just clicking “refill” like we used to. So even though the pain meds may be covered and cost $5 well the 15 min doctor visit cost $375, the car ride cost $20+ in gas, the vomiting all the way up and down the freeway… You get the picture. The meds end up costing a lot of moment and days of recouping and doctor nor the government give a damn as long as they get a profit.
I was told I have to come in before the 27th and make an appointment or I can no longer “legally” have my pain meds I’ve been on for 15+ years. So they will let us withdrawl or go without them in so much pain we are crying and suicide is on our mind because of the severe pain? I am still healing from my swollen brain and can’t really be in a car, I have an IVIG infusion which will wipe me out and most likely cause the swelling to come back in the next week. I hinted how I cannot leave the house at this time but I’m told by law I must make an appointment and see the doctor asap or I lose my refills.
So because some choose to abuse pain meds! steal them or sell them, the literal pain sufferers have to suffer and pay large amounts of money due to this new “law”. The people that make these laws don’t think or use common sense. There are a million better ways to crack down on pill abusers or pill pushing doctors but this law is not the answer. The reason I am upset is because I’ve gone without pain meds before while switching doctors and my pain was so severe I can’t think, I just lay there crying and nothing else seems to help. Ketamine infusions were helping me but UCD refuses to let any “outsiders” in even though I am an insider. I’ve tried everything and I was at my last resort with ketamine IV. I have a great pain managemt doctor, natural pain meds…etc.
The only meds that help my body are Norco and morphine (since fentanyl patches burn my skin) and I feel like an outlaw just getting them filled. We are forced to make an appointment to get these pain meds refilled yet when we are at the appointment the doctors always say “you are only here just to get pain meds hmmm I don’t trust you”. It’s like the twilight zone where you just want to say “okay what’s going on here?”. We are too weak, mentally drained to even think or speak (not because of the meds) but they look at us funny as if we are exaggerating our pain or symptoms. Then make you pee in a cup to see if you have been overdosing the recommended amount.
I do agree that there are too many people given pain medication that do not need them at all and there are too many abusers. But I don’t agree on making bedridden people battling for their lives to have to get in a car and drive for hours to get medication. Especially us Lymies who have to pay out of pocket for a doctor visit. I bet they think it’s no big deal as most non-Lyme patients doctor visits are actually covered and their doctors are near by. I hate to see what law comes next.