nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I started chloraquine and primaquine Monday.
I have been off everything for about 48 hours but this morning I feel as though I have been drugged in a bad way. My vision is dim. My ears are squealing so loud it makes the rest of the world seems like a blur.
It began yesterday. The tension and fatigue was so severe at times I was shaking. Last night I could not sleep. Finally I fell asleep 8 this morning and had the most horrible nightmares I have ever experienced.
I read one healthy woman volunteered for a trial of chloroquine. She was injected with malaria and allowed to sicken. Then they gave her chloroquine. She had this same reaction and it lasted for weeks. They called it depersonalization and anxiety. I am very worried. The only thing I can think of to do is ask the doctor for IV glutathione.
I am afraid I cannot tolerate drugs any more. I am suffering from the infections or suffering from drug side effects. This is a terrorizing experience.
-------------------- 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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Tammy N.
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posted
I am so sorry nefferdun. Scary, I can imagine.
If you can tolerate the glutathione IV, then I don't see a downside.
Try to do all you can mentally to life yourself out of it also. Yes, it's physical, no question. But try to help yourself mentally as well. Hard, I know.
I hope it passes quickly. Posts: 2238 | From East Coast | Registered: Jul 2010
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nefferdun
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Thanks Tammy, My sweet husband took over for me and got me through the worst of it. He took me out for a walk and I only feel dazzed now.
I have glutathione patches and I may have made it worse by putting one of them on. I thought it would help but it might have just stirred things up.
It was worse than bart and levaquin. These infections can be so scary.
-------------------- 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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Tammy N.
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posted
Oh good. That is wonderful. Maybe walk again later, and tomorrow again. Breathe deeply. And KNOW you will get thru this. And thank that sweet husband. What a blessing...
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
I'm so sorry. Glad to hear you feel like things might be improving; sure hope so. Yes, this whole experience can be so awful and frightening, ugh. TS
Posts: 566 | From West Coast | Registered: May 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lyme in Putnam
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Hope things get better soon. Feel better.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Rumigirl
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posted
Try coffee enemas, they can work wonders when you are toxic from a bad drug reaction.
If you look on the other thread about Plaquenil, I posted there about having had a horrible LSD like reaction to it a couple of years ago What a nightmare! Feel better soon. Thank goodness your husband is there to help.
The other thing is that apparently when you have had a bad psych reaction to Plaquenil, etc., anti-anxiety meds or supplements can help. But when it happened to me one of two times (2 different times with meds in the same class), I didn't want to go near another med!
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Rumigirl
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Try coffee enemas, they can work wonders when you are toxic from a bad drug reaction.
If you look on the other thread about Plaquenil, I posted there about having had a horrible LSD like reaction to it a couple of years ago What a nightmare! Feel better soon. Thank goodness your husband is there to help.
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nefferdun
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posted
Thanks everyone. I am much better today. I was worried that I would be like that for weeks and I did not know how I would do it. I am still not sleeping well but get enough so that I can get by.
I am very sensitive to caffeine and a lot of dugs - get paradoxical reactions and bad side effects. GABA helps me. I am also detoxing with ALA, my methyl vitamins and a glutathione patch.
I am back on just the minocycline. I can't stop it because when I do I get stabbing pains. I was afraid after that reaction that I would not be able to tolerate anything -
Rumigirl, you are up pretty late (or early) yourself. I hope you are sleeping ok.
-------------------- 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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nefferdun
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posted
I just want to leave this on a good note. I think the chloroquine really helped me and what I was experiencing was a huge herx. My mind is clearer and I have less breathlessness. Still have the intermittant stabbing pains though.
-------------------- 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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TF
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posted
This is great news.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Don't have time to look it up right now -- but isn't chloroquine or primaquine -- forget which one -- in the same class as quinine.
Many docs will not prescribe quinine because of the potential for hearing loss.
Don't know what dose you took -- but when Hubby took the low dose Liz 28 protocol of those 2 meds posted on LymeNet back in 2007 he ended up in the ER and hospital at least one time. They are very powerful meds but the herx can be very severe.
Hubby is actually in the hospital right now from restarting babs meds after an almost 2 month break from meds. Based on a CT scan they were trying to tell us he had a stroke but neither of us believed them and the neuro agrees with us. He should be released today after they do an MRI to confirm there was no actual stroke.
Actually hubby's problem was I gave him some herbs to flush out his liver -- his bilirubin had been elevated for 3 weeks and I think I flushed out some babesia as well and he was on too low of a dose of babs meds. When I added back malarone while he has been in the hospital he is slowly improving. The tremors, myoclonus and dystonia and nausea and vomiting and sweating are decreasing. Those are his major babesia symptoms.
Take care and remember to go slow when adding in any new med.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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nefferdun
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Thanks Bea, I am sorry your husband is back in the hospital. He seemed to be doing so much better. That is what is so upsetting about these diseases. When we make gains, they can be snatched away so quickly but eventually we will get through it.
One of my friends had a terrible virus causing vomiting and sweating. It would be great if your husband just had that. I had to quit malarone because it was giving me babesia like side effects of dizziness and fatigue. That is why I tried a new type of drug.
It is good you posted this because I was considering trying just the primaquine again. These drugs can cause permanent damage which is always listed as very rare but you never know. I am going to stay away from them.
My babesia symptoms are very diminished. The vertigo, headaches, hot flashing, ataxia and large muscle cramping is hopefully gone. My fatigue seems better and my brain function seems closer to normal but it has been so long since I experienced what normal feels like that I am probably just better than I was.
I have been here before many times, only to crash again. I have been doing pretty well with the low fat vegan diet although I cheat now and then. Maybe it really will help. I will pulse ivermectin to see if it helps but it kind of scares me to be trying something new without better information which just isn't out there yet.
I have developed a new symptoms during the winter which is stabbing pain that comes and goes. I don't think it is related to babesia. It is near the joints but not in them. Another thing that lingers is typing in words that do not fit, leaving words out etc. I just had to edit this.
-------------------- 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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I think you are correct that the stabbing pain is probably from lyme and not babesia -- I think I read a Buhner question on that but can't remember.
They just took hubby for his MRI and I just got the copies of his bloodwork from medical records. It is pretty obvious that he did have some sort of hemolysis (die off of red blood cells) that led to this crash.
His RBC dropped from 5.33 last Friday (his regular weekly blood draw) to 4.19 this morning. Hemoglobin dropped from 16.8 to 13.2 and hematocrit from 47.3 to 37.2
Those aren't extremely bad numbers -- but the sudden drop is the key. I am going to ask hubby's LLMD at his appointment tomorrow again, but it is my understanding that babesia meds only attack infected cells and that if babesia is the infection involved the hemolysis either means a massive die off of red blood cells from the babesia being killed or from it multiplying and infecting new cells.
I think the 5 days on sida acuta and loading dose of lariam plus one dose of ivermectin killed off some babesia. While he has been in the hospital I have added back malarone at 2 pills 2 times per day and the nausea and sweating seem to be trying to improve.
We will be staying at least one night in a hotel and I am hoping that I can use the computer there to post the video clips from hubby's live blood cell analysis that still show babesia even after 14 months of continuous treatment.
My computer is old and doesn't have much memory plus I only have dial up so I haven't been able to get the video downloaded to youtube yet.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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nefferdun
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posted
I hope this turns out to be a good thing for him, getting rid of so many babesia infected red blood cells. I am much better. I am only taking minocycline right now. Chloroquine stays in your system 41 +- 7 days so it is very long lasting. I might get the nerve to try the primaquine again - not sure. I will for sure do another round of ivermectin.
The low fat vegan diet seems to be helping. I eat like a horse craving vegetables. I have more energy and feel more "alive".
-------------------- 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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