Topic: Made it through my second round of IVIG...best I've felt in MONTHS!
Tracy9
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I finished round two of IVIG and woke up this morning singing and dancing. Okay I'm serious. I suddenly remembered, I used to have something called a "personality!"
I was literally doing a twist like dance around my bedroom and singing "I FEEL GOOD NA NA NA NA NA NA NA!!!" Then I took my new "daughter" Marlaina (14 year old Blake and I just got custody of) to school and registered her...yup, I drove, and did all the work myself!
It was awesome! When I had the office call Cody so he wouldn't get on the bus his mouth dropped open when he saw me at the school. "Mom, you DROVE here? You must be feeling better!"
It was an amazing day. I've been mentally sharp now for several months and no longer comatose or brain fogged, since starting Rifampin, but to have my body working is amazing!
I can't imagine how great it's going to be after a few months of IVIG. I'm going to get my life back. Wow. I'm amazed!!!!
This is SO worth a couple rounds of meningitis. I really think sometimes we need to tough it out to get to the other side.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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lyme in Putnam
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-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Carol in PA
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Wow!
That's wonderful!
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Tracy9
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I know!!! I haven't even been able to say "I'm having a good day" in so long I can't even remember!!!!
WOO HOO!!!! I'm so glad I perservered despite the horrible side effects. But I was truly desperate. And I have a new doctor at the Cancer Center who REALLY gets IVIG and is even writing the orders for me now. My orders ran out this round and he wrote my next orders on the spot in case I have any trouble getting them from Dr. W in time. I was amazed! Then he asked me if I needed any pain meds in case I get the meningitis or headache again! (I didn't because I still have some Dilaudid left from last time's ER / hospital stay.)
He wants to see me monthly and is keeping close tabs on me. He will also prescribe pain meds, nausea meds, etc if I need them. So it's not just my LLD two hours away driving the bus anymore, but one of the two Cancer Center docs really taking me on now, too!
So now I am a bona fide PATIENT of the Cancer Center rather than a "gate crasher" so they will treat me better. I feel like a real...Cancer Patient now! Well not everyone there is there for Cancer. But most are. Anyway now I'll be a regular and I just plan to get better and better.
And I have passed the critical hour when the headache has hit the last two times. It started but has receded with Benadryl and Motrin so I'm really thrilled. It wasn't bad, either.
I'm tired, and it feels like normal people who get tired at normal times of night. I just hope this continues, but I really think I'm over the hump now and it will be all uphill from here!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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seekhelp
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Holy WOW. What a change!! Amazing Tracy. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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TerryK
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So happy for you!!! Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Thanks for sharing your story. Happy for you!!!
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BackinStOlaf
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Congrats! what is IVIG?
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
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kidsgotlyme
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This has made my day!! I'm so happy to hear that you are doing so well.
My friend, who is a nurse, asked me if any of my daughter's doctor had suggested IVIG with my daughter.
Now I'm thinking about looking into it. She has a lot of neuro issues.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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dmc
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Wonderful news. So happy things are going great & your health& life has turned the corner.
Nice to read you're singing.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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blinkie
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wow! Is IVIG something that is supooed to have lasting effects when it is stopped?
Tracy-you don't have cancer, do you?
Posts: 1104 | From N.California | Registered: Jan 2008
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sammy
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Tracy, I am so happy for you Now you can really start to enjoy life again. Have fun with your family and new daughter. What a blessing!
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Tracy9
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I don't have Cancer. I get the IVIG at a Cancer Center because it is a transfusion. It is a form of blood transfusion, blood plasma, of 1000 different donors combined. You get their antibodies. It goes through a rigorous processing and testing protocol before it is given to the patient.
It is supposed to have lasting effects. The healthy donor antibodies, if the treatment works, can really turn things around. Where my disease has become autoimmune, (small fiber neuropathy from Lyme & Bart), the antibodies should also confuse my immmune system so it will stop attacking itself.
The good results should be cumulative, but I take it as an excellent sign I felt so good already after the second round. I had some real good effects after the first round too.
Today I am fighting off a post IVIG headache and I'm more tired, but I know I have to make it through some side effects, too. It's nothing like last time, and hopefully it won't progress. I don't have any nausea this time either~!!!! Yay!
This is a long term treatment; could be up to a couple of years. I just want it to work, and in conjunction with the antibiotics, I think I see at long last, a glimmer of light at the end of this horrendously long tunnel!!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tammy N.
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Really great news!! It feels so good for all of us to celebrate with you and share in your joy. Continue on! Be well, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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It is probably good that you have a 2nd doc on board.
You didn't hear it from me, but a little bird told me that the LLMD neuro will be departing for warmer climes in another month or two. Notices to patients will be forthcoming.
But we were assured that phone consults would be available and the doc only needed to see patients once every 6 months in person.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Rumigirl
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Wow, fabulous, Tracy!! Just don't overdo it energy-wise yet (I know how easy it is to do that when you suddenly feel better). And I hope your headache goes away quickly.
Keep us posted. I just finished my second round, and am fighting a bit of a headache, but not too bad. Here's hoping no bad migraines from it this time. Last night I had so much energy I couldn't sleep well!
Posts: 3771 | From around | Registered: Mar 2008
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Pinelady
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So glad it works...
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Tracy9
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Bea, WHAT???? My LLMD neuro? There are two; I have Dr. W. Please tell me you mean Dr. K; because Dr. W insists on seeing me every two months or he won't refill my scripts...I know Dr. K is more easy going in that area. Dr. W won't work the "phone consult and every six months" way so I am thinking you mean Dr. K???
I should let my friend know who sees Dr. K because he traveled from Oklahoma to see him and stayed with us; and needs to go for a follow up to get his results and started on IVIG; if it is him he needs to get out here ASAP from Oklahoma to get his treatment started!!!
Anyway; Grrr...woke up this morning with shaking chills and FREEZING!!! 101 fever, achey, headache, but not severe. Damned reaction has set in! I just hope it passes quickly. I am extremely thankful the pain level is nothing like it was the last time. I really want to go to the Woodstock Fair! Rest and sleep today.
Fever has gone down with Ibuprophen and head and back pain is manageable without narcotics, just ibuprophen, so this is still a big improvment! No nausea yet today though I had it last night.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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Rumigirl, YAY!!!! Sounds wonderful!!! I love hearing you had so much energy you couldn't sleep! That is how I felt after my first round (of restarting) for the first couple days, before the meningitis set in.
I just know we are going to get better! We'll make it through these side effects, and get our lives back again!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Haley
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Wow, Tracy. I really needed to hear a success story today. Today seems like the longest day of my life.
I hope that you continue to climb upward.
I'm sure the IVIG is the main reason for your success.
Did you mention that Rifampin helped you? Are you on it now or how long have you been on it?
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MichaelTampa
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Tracy,
Great to hear. I have been contemplating IVIG. Do you mind sharing what the dose is you're getting--how many grams per kilogram of body weight?
Michael
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Rumigirl
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Tracy,
I hope that you're feeling better.
Last night my side-effects kicked in. First there is the fatigue---too tired to breathe (well, unfortunately that's "normal" for me, but it's bad).
Then, there's the extreme head, neck, and back pain. And I had a migraine last night and a bad one now. I pray it doesn't get worse.
I am willing to go through this, too, if it leads to improvement. Sigh. I hope we both make it through ok this time.
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Tracy9
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Haley, Rifampin has helped me IMMENSELY. I've been on it for five months now. It has totally cleared up my cobwebs. I have been near "comatose" for much of the time for over a year now and parts of the last three years, sleeping sometimes as much as 18 hours a day. It would take me hours to wake up, and I rarely felt alert.
Now I snap awake, am mentally clear, and not foggy at all. I am on 600 mg a day.
Michaal, I believe it's 2g/kg??? I get 40 grams a day. I'm pretty overweight right now from all the bedridden years and thyroid mess, etc.
Rumigirl...oh NOOOOO!!! Isn't it wierd how you think you just might be in the clear then they come? Oh dear...I hope it is lighter than the last round. I am so proud of you for being willing to go through this, too, if it leads to improvement...and it makes me feel so good to have a buddy to go through this with! However I wish you didn't have to suffer. I hope you have good pain meds!
I am definitely not getting hit as badly this time. My headache is much more manageable. It hurts but nothing like the last two bouts. I'm nauseous but haven't had to take any Zofran. My fever hasn't spiked again since this morning.
I'm achey all over and my back hurts, but again it is far less in severity than last time. I really, really hope your symptoms lighten up. I'm feeling extremely encouraged by the side effects being so much less severe this time, and by having that incredible day on Thursday!
We are going to make it!!!! Keep us posted on how you are!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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nefferdun
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I just loved your post, dancing round your room singing "I feel good> ". So funny and uplifting. Hope you continue to get better and better.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Pinelady
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Lots of Dancing going on....So Happy it is working.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Rumigirl
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Well, last night was baaad---up all night in ungodly pain. And with my migraine med that is a shot (Imitrex), the pen malfunctioned, so I didn't receive the dose (for the umpteenth time!). But I wasn't sure if I had or not. So the upshot was terrible pain, even with lots of other pain meds. Never did get rid of the migraine and pain until late today.
This am not good either. Finally, better. Whew! What a battle. Onward and upward, I hope.
How are you doing now?
Posts: 3771 | From around | Registered: Mar 2008
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Wow that is such great news! You def. deserve a break after all you have been thru. Is Rifampin the only abx you take with the IVIG?
I have not been here in awhile but it is great to see there are a few using IVIG and getting better!
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Rumigirl
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This is 3 days post last IVIG tx. The fatigue is crushing, can't really be upright much. This is not a tx for wimps! Not that any of the txs are.
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springshowers
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What what a story'Sounds like this is harsh treatment with lots of side affects and I hope for both of you that you get continued improvements and finally improvement and full health!!
Good Luck. Keep up the good days
Blessings !
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Tracy9
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Stacy, I am also on Malarone and Zith, and the other stuff listed below.
Rumigirl, I hope you are feeling better! I am doing better each day; still tired and achey, flu like feeling, still running a low grade temp.
I'm sure the reactions will lessen with each round! A week from today and I'm back again!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Ok I see duh (should have look at the bottom) I am glad you are feeling better no matter what you are taking :-)
Hope the rest of the family is doing better too!
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Tracy9
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I'm at the Cancer Center getting IVIG. I didn't think I'd need a central line because it's just every other Monday and Tuesday; but man it's getting ROUGH.
My hand barely heals in time for the next round. And having been in the hospital in between this time, it was slim pickin's.
The nurse very painfully blew three veins in my hands before she got a line in. This is really getting old. I always have black and blue hands, swelling from infiltrate, and pain. One hematologist I saw said no more lines due to the clotting disorder, but I'm going to get a second opinion to be sure.
I sure don' t want another clot, though they were AlL superficial and not dangerous. And my former hematologis said they would not be a problem as long as I am on Coumadin which I am. I think I need a third opinion because I'm afraid my veins are not going to last much longer, and I need the IVIG long term.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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OMG!!! I'm getting a CHEST PORT!! (Not sure why I find this so exciting...) I FREAKING LOVE MY CANCER DOC!! I just saw him out at the nurse's station so I grabbed my IV pole and out I went...he said I definitely need a chest port, he feels it is safe, he will ORDER IT,
If and when DR. Weiss leaves he will TAKE OVER ordering my IVIG!! OMG, this is a total prayer answered! He will consult with him by phone, but he will do it!!! I can't believe it! This is the best news ever! For those of you who don't know it's HARD to find a doctor to order IVIG, usually only neurologist or immunologists do it!
He said he doesn't think I"ll need it lifelong, but probably for a year or two, as long as it is helping. This is the BEST NEWS I could have possibly hoped for! I can find another Lyme doc to order my orals, but the IVIG was going to be hard!
I'm so freaking happy! A chest port, no more painful blown veins, no more heplocks...maybe I'll get the surgery before my next round of IVIG! It's just barbaric to be poked all the time like this, plus the stuff is really hard on your veins.
Now, no blood clots. None allowed. Nope. He feels I'll be safe on Coumadin. He said he'll put me on Lovenox for a week or so at first.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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OH, and for my update: I was a week late because I ended up inpatient last Sun - Tues with chest pain, unrelated to IVIG. All checked out okay, chest wall pain I guess. So it's been three weeks since my last round.
Rumigirl, how did Round 3 go for you? I'm coming close to the end of round 3. I've been extremely fatigued for the last week, unable to get out of bed, but I was out of meds (Rifampin, Malarone, Zith) for two weeks and it caught up with me. Finally got my refills yesterday so I hope to bounce back.
My side effects usually hit two days after the completion of IVIG. So if it works like the last two times, tomorrow will be a great day, then I may feel the side effects. I'm hoping this time they won't be as bad. Last time it felt like I had a really bad flu.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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Bea, Dr. W said he has not decided on moving yet. His wife and children do not want to move. They like it in CT, kids don't want to change schools, etc. He has several reasons for wanting to move, but he has to take their feelings into consideration. So he hasn't even made a decision yet.
He gave me a script for IVIG for four months. Nothing is happening anytime soon. He is still taking new patients.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
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OOPS one more thing; Amy should not have said anything...he hasn't told ANYONE and was shocked I'd heard it. He said NOT to repeat it, it is just an idea at this point.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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sammy
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Tracy, I hope that you will continue to improve with your IVIG and antibiotic treatments. It sounds like you've got a good team of doctors who actually care for you.
Let us know when you are scheduled for the port placement so that we can pray that all goes well with that too.
By the way, Lovenox is a great idea.
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Tracy9
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OH thank you so much Sammy! I just realized this also means I can get IV antibiotics again if need be! My course of Rocephin was cut short by blood clots in my PICC line. Maybe I can speed things up a bit (I mean, it HAS been six years now!) by getting some things by IV! I'm so freaking excited! I can't wait to call Dr. W and see if he'll switch something on over to IV....maybe the Zith, or Rifampin, or put me back on Rocephin!!! WAHOOOO!!!!
I'm gonna get better....I'm gonna get better.....
And my son is getting a chest port soon, too...so he won't feel so lonely!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Rumigirl
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Great, Tracy. As soon as I read your post about the blown veins, I knew that's what you needed (before I read the next post saying that you'd get it).
I'm getting one in next Mon. It was supposed to have been put in this past Mon., but when I called to confirm, the surgeon's sec'y said casually, "Oh, he won't be in that week."!! I said that I'd made the appt weeks ago, and no one had informed me!
Yes, the time before last, I had the nurse blow 3 veins before she got a line in. I'm still all black and blue from that.
This last time, I had bad migraines and fatigue for 2-3 days, instead of more time. And the migraines weren't good, but I guess better than the previous 2 times. So slowly improving on the reactions afterwards. At first I have way more energy, but it doesn't last long at all.
I'll be starting IV ceftriaxone again after I get the port. And I found a great home IVIG nurse, so that is good. Step by step.
Oxford is covering 28 days of IV abx, and then, most likely, I'm on my own. I'm just worried that they may not cover it through
Major Medical after I've bought it out of pocket, as they did in the past. Sammy has that problem through UHC (the same co really). If that happens, I'll really be up the creek!
Oh, and I'm greatly relieved to hear that Dr. W may not move. I was really freaking out about that for quite a while. I just started with him! And it would be incredibly expensive and difficult for
me to start over with someone else. That's a major faux pas that A said that to me and others when it turned out to be not sure at all.
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Tracy9
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Yes, he'd be really upset if he knew she said that, because he wanted to know where I'd heard it. Anyway I'm amazed my doctor at the Cancer Center has agreed to take it over even though he has never heard of small fiber neuropathy. I guess he has treated with IVIG for many other things, and said he will do it as long as it is helping me.
This time my IVIG reaction was profound weakness. I was like a wet noodle, could not walk by myself, or do anything. It's been different and lighter each time. First time (since I restarted) meningitis, but only lasted 4-5 days and then I was fine. Second time, bad flu like reaction for 4-5 days. This time, wet noodle weakness, unable to walk unassisted or anything for 4-5 days. But I would say each reaction has been an improvement. This last time, no need for Motrin even. That's quite a bit of progress from my first go round, last January, four days in patient on IV Diluadid!
I'm so glad the weakness passed. It was scary because it was just too reminiscent of how I've felt much of the last three years, particularly the last year. I've laid in bed for weeks feeling that way. I woke up yesterday and I could walk on my own again, and today I was pretty steady and mobile! I went to the Cancer Center to see my doctor and to the lab for a Coumadin draw and did not even need a cane or any assistance.
It's weird how these reactions are there one day and gone the next. I think I have it down to a science now; 2 days of transfusing; one good day, reaction hits for 4-5 days, 6 days of feeling better than I have been, then back to the beginning.
It's only going to get better! I'll be getting a medi port soon. It looks like there is a round alien under your chest, but it beats blowing veins out. They are going to go over it with me on Monday when I go in for round 4 with a plastic model of a chest, (nifty things they have in a Cancer Center!) and then once I fully understand and agree they will schedule the surgery.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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