Just to reiterate, I had an abnormal SPECT scan last week and most of my symptoms are neuro in the head besides having tachycardia and anxiety issues.
Met with my LLMD 2 days ago and he though 3 days of IV Solumedrol might help brain inflammation and reduce any Cytokine response to bring me Neuro improvement.
So I got the Solumedrol about 2 hours ago now and right after the infustion I started Slurring my speech and could tell my salivation was excessive. I remained calm, but about 30 min. after this I started getting real jittery and could feel my anxiety getting out of control.
I quickly took some Xanax, but it isn't doing much. I also took my pm dose of Klonopin, but I still feel all revved up, which can be a side effect of Solumedrol.
I know some of you might jump on this and say how bad steroids are when you have Lyme and even the LLMD agrees with this, but he also feels in my case, small doses won't cause major issues. I'm only supposed to get 3 doses total.
So I have to see how I feel tomorrow to decide if I can handle another dose or not, but I also have to figure out that even if I don't feel well, should I just take the 2nd and 3rd dose hoping it will improve my neuro symptoms by reducing inflammation.
The effects of Solumedrol can last many days if not longer from the final dose, so this is a big decision for me now. Certainly if I feel cognitive clearing tomorrow, than it is worth it.
Signing off now, but hope to see some responses in the morning.
BTW, if I call my LLMD, I'm sure I will be told the anxiety I'm feeling is a known side effect of Solumedrol and the decision to continue will be mine. The slurred speech seems to be improving now as I type this, but still scary and Is NOT a side effect of Solumedrol and I've never had this before.
He is also giving me IV Normal Saline 1 Liter per day to help with flushing out toxins and I just started Cholestyramine 2 packets per day to bind toxins as well. I started this yesterday and don't see this as a factor as some have reported Herxing from this.
Gary
Posted by lymetwister (Member # 19590) on :
Anxiety and Slurred speech are now back to baseline I guess 3 hours post the Solumedrol infusion.
I guess if I don't feel any worse tomorrow and go back to baseline, or by chance feel better, I'll proceed with dose #2.
Would still like to hear your thoughts.
Gary
Posted by CD57 (Member # 11749) on :
Keep us posted on what happenes.
Posted by Rumigirl (Member # 15091) on :
Uh, IV steroids for LD??? Yikes! Haven't you read Dr. B's guidelines, where he speaks about "steroid disasters" in Lyme patients? It is usually only reserved for situations where it's life and death, or you're going to lose your eye sight.
Am I missing something here? There are other methods to get the cytokines down, ie glutathione. Watch out, Gary.
Posted by treepatrol (Member # 4117) on :
We preach no steroids I just dont get some Drs?
Posted by djf2005 (Member # 11449) on :
BAD idea. For many reasons.
Posted by gwb (Member # 7273) on :
Eight months ago I took three steroid shots. Came close to death from taking those shots. I lived in agony for six months. My immune system went haywire and I lost 75 pounds in six months. Still recovering from it.
Steroids? Lyme? Makes no sense.
Gary
Posted by trigal2 (Member # 20578) on :
I had IV steriods a couple of months ago during sinus surgery.
They were told not to give me steriods but they did - right in the IV.
Two days after the surgery I was in lyme hell. Luckily I was on abx.s at the time.
I felt like I had lost alot of the progress I made and was really irritated that the ENT did not follow instructions.
Are you on abx.;s during this steroid tx.?
Posted by METALLlC BLUE (Member # 6628) on :
Some steroid use is acceptable if severe inflammation is doing significant damage. Brain SPECT scan abnormalities can usually be resolved slowly using Tetracycline drugs and other antibiotic therapies. The inflammation and blood flow is restored
Most physicians who specialize in Lyme are familiar with using steroids when necessary.
High dose antibiotic therapy is necessary (The highest dose the patient can tolerate), while using steroids.
Posted by Lymetoo (Member # 743) on :
Posted by painted turtle (Member # 7801) on :
I was given IV steroids last summer because I was going into anaphylactic shock, so, of course that was a no brainer.
Then after the initial IV, I continued a gradual lowering dose of the steroid over the course of the next several days.
I felt so absolutely energized. I felt the kind of energy I had before the Lyme brought me down. I loved it (except for the dizziness) and I really hoped it would be a lasting reboot to my system. If I remember correctly, my pain lessened too.
But unfortunately, it was not lasting and once I stopped the steroids, the same old lyme tune came back.
I guess my question is, does your doc think this will bring lasting changes? I mean, it seems to me, this is something you would need to keep doing in order to see an effect that is lasting? If all its going to do is bring you some bizarre high with slurred speech and anxiety to the point of having to add xanax, then everything goes back to the way it was....it doesn't seem very practical.
But if it brings some lasting sort of change that moves you in the right direction, then I guess the bizarre high might be worth enduring.
Posted by lymetwister (Member # 19590) on :
I decided to hold the second dose of 3 of the IV Solumedrol, but I think I will take dose #2 tomorrow.
The half life is almost 1 1/2 days and this is the reason.
The anxiety and slurred speech were gone upon awakening.
My Lyme doc. ordered this to reduce Cytokine activity in the brain, this is what he told me, plus he thought it would help with additional inflammation issues without disrupting my Immune system as it is a one time 3 day course and considered low dose.
I have to admit, I have alot more energy today and generally overall feel a bit better than my baseline.
The Lyme rule is indicated b/c of the immune modulating issues from everything I have read. I am on IV Rocephin 2gm daily right now with Mepron every other day and lots of probiotics and other supps., so I would think I would be safe.
Nevertheless, I will wait another day to see how I am. I am a little worried given what I have read here and my experience last night, but I did wind up sleeping like a baby somehow.
Gary
Posted by laurisabelle222 (Member # 16591) on :
Glad that you are feeling better Gary. Hope it continues If it doesn't, I'd call the dr. right away.
Posted by Amanda (Member # 14107) on :
I am sorry you are suffering so much.
If you have brain inflamation, that does sound very serious, so I can see why the LLMD recommended the steriods.
If you feel your lyme is getting worse, why not ask the LLMD for some IV abx? I believe several prominant LLMDs will give steriods to patients like you with brain inflamation (since that can truly be life or death), but they also give the patient IV abx at the same time....
I hope you grt better soon.
Posted by lauirel (Member # 16640) on :
Gary,
Before going ahead with the second dose if that is what you choose, PLEASE, talk with your prescribing LLMD about your experiences. He may or may not decide for you whether to discontinue the next doses, due to the symptoms you displayed. The one most concerning to me is slurred speech.
Edited to add: One of my biggest concerns, is precursor symptoms to stroke.
This is not normal and you should not take a second dose without telling him about it. Then together, with the warnings and info you have gotten here, you both can come to a decision.
And you can also tell him of the reaction by all of us here, and that due to that, you need just a little bit more information to address the dis-ease of these infusions.
Be Well.
LaurieL
Posted by djf2005 (Member # 11449) on :
Anyone w/ Lyme who has neurological symptoms has some level of brain inflammation.
Posted by notkrazybrian (Member # 10621) on :
many people are right on this board. DJF hit it right on the head when he sad anyone with lyme who has neuro symptoms has some level of inflammation. Im going through a flare up and my neuro are maxed out. My headaches feel like they are inflamed induced.
Steriods (only cortef) Alot of poeple with lyme have anxiety/panic. Many have ALOT of stress in their lives. Your adrenal glands which make the steriod cortef is whats made when yer body is under attack mentally or physically. Like many lyme patients this goes on for a long time. Your always stressed out no energy, bills are pilling up, and then all the mental illness that comes with lyme add adhd panic disorder etc do not help the glands they just make them work overtime, so they began lagging. At first when this happens your glands may be overstimulated because its trying to fight off, but overtime become weak and sluggish. I dont see a problem with someone with lyme who needs a small dose of cortef a problem. It may give u energy. You may be able to stay on yer feet longer if your othrostatics are bad.
IV Steriods- Welp that all depends on when you get it someone with lyme could be ineed of iv riods in a real bad flare up it just all depends on the patient and how severe their case is
Posted by lauirel (Member # 16640) on :
Anyone with neuro Lyme has some amount of inflammation. Yes, and the associated headaches, dizziness, brain fog, yadi ya.
Most do not develop slurred speech and should not be ignored, nor should it be only associated with Lyme or its co-infections.
It is system wide disease within our body, and creates more disease. So yeah, one can blame it on Lyme, but the development may be something in and of itself and should not be ignored and should be discussed with their treating LLMD due to these considerations.
In good health...
LaurieL
Posted by ArtistDi (Member # 2297) on :
If you are feeling that jittery and strange, the dose is likely too high. I have been on steroids in tandem with antibiotics, and when my dose was way too high, I felt like I was coming out of my skin. It was reduced and I felt better.
The good thing about IV steroids is that they don't stay in the system as long as orals.
I hope you can try a lower dose.
Posted by sixgoofykids (Member # 11141) on :
Gary, have you ever tried Plaquenil? It's anti-inflammatory. It also helps macrolides to work better, is anti-malarial, and breaks cysts.
Turmeric is good for inflammation, too, but I don't think it would be strong enough to handle all yours, might not be a bad idea in addition to other things, though.
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If it doesn't, I'd call the dr. right away.