posted
I took art about 4 weeks ago and after i took it everything has changed.in the middle of the night my breathing screw up..I feel like I am out of it and I get myclonic jerks..the wierd tingling is all over the back and i had the runs last night..I cant sleep as i think I messed up my brain stem from the art...I am so screwed up and dont know what to do..I have all sorts of neuro problems but a clear mri and pet..spect show severe hypopperfusion...I am on mep and zith and i am going to stop it now..the art has anyone had the same reaction like me..ears are sensitive to sound...just feel awful..could all this be a herx and there is no damage?I get scared to go to sleep...also i am cold all the time but body temp is 96.5..I jut want to live... eric
Posts: 593 | From long island ny | Registered: Apr 2006
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posted
PB, I am sorry you are feeling like a near death experience. I have not been here long enough to give you sage advice on the Art. I hope someone can answer your question. Do you have a LLMD you can call? I hope you are under the guidance of a good doc. My best to you.
Posts: 145 | From NorthEast US | Registered: Aug 2005
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I am so sorry you are going through this hell. My son is also going through the same with the neuro problems.
I'm no expert, but it sounds like this may be a herx from the mepron/zith. Doing it's job and making things worse before they get better.
Please dont stop taking your meds until you talk to your llmd. You should call him/her first thing Monday morning.
Are you taking probiotics like theralac? And drinking a ton of water can also help your body rid of toxins alot.
I know this is scary, but you will get through this.
Healing thoughts to you ~Ma
Posts: 70 | From Central NY | Registered: Sep 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I've never heard of art causing damage to the brain stem. It's very likely a herx that is continuing because of Mepron and Zith. Did you ever talk to a doctor about the art? What did the doctor say?
The autonomic nervous system regulates the non-voluntary, non-sensory nervous system. It basically regulates all the organs, basic life functions, etc.
It is pretty common for people with Lyme to have autonomic neuropathy. Usually what happens in Lymies is that the parasympathetic system, which is the rest and digest system, is underactive. The sympathetic system, which is fight or flight (stress mode) is often hyper-active.
There are varying degress of autonomic nervous system disfunction. In my case, some of the symptoms include an anxious feeling on waking, motor tics (that we thought were myoclonic jerks), diarhea, nausea, loss of appetite, inability to tolerate heat, inability to tolerate cardio exercise.
The best treatment is treating the underlying infection. But my doctor also has me on many supplements to correct deficiencies that have created a cycle of neuropathy (amino acids, B vitamins, Vitamin C, magnesium primarily). There are also medications to help regulate blood pressure problems from autonomic neuropathy.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
sorry to hear you are so sick polar blast.
I would call your LLMD asasp and ask if you can lower the art or maybe even pulse it.
Art's an herb but a very powerful one. It sounds like a herx but you could be having some side effects that need to be followed very closely by your doctor..
If you have the runs make sure to replace your electro-lites and drink extra water.
hang in there and hope you can reach your doc soon
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Eric, most of us, many of us, have these intense issues and there are times we think we are gonna just die. So hang in there, we on this board know it is hard.
I think you should touch base with your LLMD. When things like this happenedto me I learned to stop the medication and talk to the doctor. The problem with that is with mepron: if you go off and on it, you can become immune to it and it won't help anymore.
I hope you are getting tons of rest, and as little stress as possible.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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char
Frequent Contributor (1K+ posts)
Member # 8315
You will be okay. Sounds like a massive herx. Are you doing anything to help detox? That should help.
It's so hard to have hope when you are in the midst but you will get through it. I have been sick for years and still spent the last week wishing the ground would open up and swallow me.
Call your doc, he may have something to help.
Good luck and much love,
-------------------- Daisy Posts: 122 | From at the computer | Registered: Jul 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Polar, I'm SO sorry you're feeling this way.
It's NOT permanent!
Research shows that babesial organisms can be present in the brain vasculature in numbers five times greater than anywhere else in the body.
Add Mepron, Zith, and Art, and it is going to hurt.
However, that does not mean it is not working. It probably means the opposite.
You might need to back off the Art because it surely does add a mighty punch to the Mepron. However, I would not abandon it.
I went through this too when starting this regimen (I have babesia WA1); was pretty sure I would die from head pain. Was a bit worried my daughter might find me thus. It passed, and miraculously I did not.
A better day will come soon. Really. Hang on.
PLEASE call and check in with your LLMD.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I talked to my doc and he said that it is a herx nd that the initial 3 days of art started the cascade of events...it all started with the art and the old symptoms came back..the sense of an altered state when trying to sleep is back and worse then it was before...while i was taking the meprom and zith i could not function and had very bad cognitive issues and felt like i did not want to talk to people...it was the worst herx I have ever experienced...I just could not breath on the mepron and I think it was because it was in the nerves not the lungs..anyway I am hoping that I will be able to go to sleep without feeling my lungs gasp...I feel great today as far as cognition so the herx from hell is over..also I cant fall asleep without strange feeling that started with art..my doctor does not supply art..anyway my pet scan from last year is normal and so is my mri from last week so i hope this will subside...this is the most frightening herx ever..anyone else get this type of thing?
Posts: 593 | From long island ny | Registered: Apr 2006
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posted
i did not use art with the mepron...I took art two weeks earlier..that was the herx from hell but only after three days of art...i was taking 200mg 1st day 300mg nd day 200 mg one dose third day and stopped do to slurred speach and vertigo...hope I am ok... eric
Posts: 593 | From long island ny | Registered: Apr 2006
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posted
Polar: Thoughts and prayers are with you to help you get through this mess. Hang in there and keep trying as hard as you can.
Posts: 719 | From Delaware | Registered: Jan 2006
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Toxicol Lett. 2004 Mar 1;147(2):99-107. Links Comment in: Toxicol Lett. 2004 Aug 1;151(3):489-90, author reply 491-2. Artemisinin derivatives: toxic for laboratory animals, safe for humans?Gordi T, Lepist EI. Department of Pharmaceutics, School of Pharmacy, State University of New York at Buffalo, Buffalo, NY 14260, USA. [email protected]
A discrepancy seems to prevail with regard to the toxicity and safety of the artemisinin family of antimalarials. While these compounds have been found to be virtually void of any serious side effects in humans, their neurotoxicity in animal models has raised concerns about their use. In this paper, we present selected examples of both pre-clinical and clinical studies dealing with adverse effects of artemisinin drugs. We suggest that the prolonged presence of artemisinins upon slow release from oil-based intramuscular formulations is the main cause of the observed toxicity in laboratory animals. In contrast, oral intake of these compounds, which is by far the most common formulation used for treatment of malaria patients, results in rapid clearance of these drugs and is thus unlikely to cause any toxicity in human subjects. Another plausible factor may be the relatively high doses of artemisinin compounds used in animal studies. In conclusion, the observation of the toxicity of artemisinin compounds in animals, but not in humans, is most likely due to different pharmacokinetic profiles after different routes of administrations.
PMID: 14757313 [PubMed - indexed for MEDLINE]
Posts: 416 | From france | Registered: Oct 2001
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Med Trop (Mars). 1998;58(3 Suppl):32-7. Links Neurotoxicity and artemisinin compounds do the observations in animals justify limitation of clinical use?Dayan AD. Department of Toxicology, Saint Bartholomew's School of Medicine, London, United Kingdom. [email protected]
High parenteral doses of certain artemisinin derivatives can produce a limited and unique, ******selective brain stem neuronopathy in laboratory animals.**** There is necrosis of a small number of nerve cells in certain brain stem nuclei and more extensive chromatolysis of neurons in the same nuclei a few days after *****intramuscular or intravenous injection of dihydroqinghaosu, artemether and arteether in doses exceeding about 6mg/kg/d intramuscular or intravenous for about 3-5 days (in an oily solvent) in the dog, or after a single parenteral dose exceeding about 100 mg/kg. The limited information available about the monkey suggests that it is only affected after doses several times higher. The probable order of sensitivity of species is dog > rat > monkey, but this is based on only few results. No lesions have been reported after various intramuscular and oral dosages of artesunate and artelinate. The limited reports of clinical observations have not suggested any specific pattern of abnormalities. The lesion is unique in its distribution, in the small number of neurons that become necrotic and the occurrence in nearby cells of chromatolysis. The latter is almost certainly reversible because more prolonged or higher dose studies have not shown more extensive neuronal damage. As the pathogenesis of this toxic response is not known, evaluation of the risk to man must be based on conventional assessment of active doses in animals versus those employed in the treatment of cerebral malaria. It is argued that there is no reason to anticipate a particular risk of conventional regimes employing up to artemether 3-6mg/kg/d intramuscular or other regimes involving artesunate per rectum for a few days.
PMID: 10212895 [PubMed - indexed for MEDLINE]
Posts: 416 | From france | Registered: Oct 2001
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posted
does this mean it is temporary?I hope so..does it also mean that the brain problems were from parental administration?I have a startle reflex with my eye now and hoping it will go away...what is the sayde dose of oral artemisinin?did I exeed the maximum dose or was I wrong to double up on the dose?...is a gerx from artemisinin occurr like what my herx was...why is it taking so long to dissapear?is it because I am on mepron?also does mepron mess up the nuero circuits like artemisinin?sorry to ask so many questions...I believe that the infection was on the brain stem and the art removed it...its just the damage that i am worryed about..how long till herx symptoms dissapear? eric thanks
Posts: 593 | From long island ny | Registered: Apr 2006
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Yes it's temporary. The doses that you took of Art were relatively small. Most people take around 200 mg 3 x's a day. You did good to start small and just do one dose to test the waters. To Be safe, you might try using 100 mg just once a day and work through the herx until it subsides.
Art is only an adjuctant to Mep/Zith. It does help, but I have found that much higher doses are needed for it to be really effective. Like the study says that Nelly posted, Art taken orally is cleared pretty quickly. That's how you took it right..in capsules? Parenteraly means that it was put into your vein. That's where it is more likely to be toxic. They also use a different form of Art called Artemether which has a much longer half life. I doubt very much if you will have any lasting damage from Artemisinin. In fact, I don't think that you have sustained any damage, only an increase in Sx's
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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posted
i took 200mg then 300 mg then 200 together then stopped do to slurred words and vertigo..now my problems is sleeping...i cant enter sleep..ill try to relax and drift off.. eric
Posts: 593 | From long island ny | Registered: Apr 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Polar,
Sorry you are feeling so badly. I hope you can take the time today to just hang out and relax without responsibilities and stress. Sounds like a herx in my opinion, and you should keep in close touch with your llmd. If I felt that way, I would probably stop taking whatever abx I was on.
I had a bad day too -- congested lungs, exhaustion. Let's both relax! take good care.
Posts: 2557 | From home | Registered: Aug 2006
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Polar Blast, if a herx seems to be killing you , then please cut back and ramp up slower.
WE need you well for the big Duck party. It is in your back yard. I remember you were there in Ct. I was the giant tick. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
Hi It sounds the the horrible neuro herxs I experienced w/ Mepron and Zithro.. I went thru all kinds of strange new symptoms while on that treatment for 6 + months.It stirred up anything & everything. Photophobia ,sensitivity to sound, rage, crying, severe depression, itching crawling tingling sensations, and chemical sensitivity too amoung others. It was nescesary to treat with it but I was literally nearly suicidal the first couple of months. After that I came to realize after taking a break that it was the meds / and or die off. I was also on IV primaxin or IV rocephin too with that combo.The NP used to say that maybe there was some manner in which mepron was hitting the Lyme intead of just babs.
I think maybe if it gets to be too overwelming - you should take a couple of week Mepron break.take care & hope you feel better.
-------------------- Sandi ( badkitti30043) Posts: 664 | From Atlanta Ga. | Registered: Aug 2002
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Did you read my last post about my scary experience on mepron and zith? Major major herx. Friday I called LLMD and he told me to temporarily STOP the meds due to my major neuro symptoms. I too had slurred speech that day,severe myoclonus episodes, vibrations and numbness and even temporary paralysis one morning. I felt that my breathing was affected and my swallowing was affected and I was sure I was dieing of ALS.
Well, I want to tell you that I am feeling better, the breathing issues went away and the vibrations are lessening.
Since Zithromax stays in your body longer due to a longer half life, it may take you just a couple days to start feeling better.
I tried some antiinflammatories, drank lots of lemon in water, etc. My doc asked me on the phone about being on his neurotransmitter protocol and he said I need to start that because that helps with the vibrating stuff.
I had stiff neck and sensitivity to sound at first when very sick from Lyme meningitis and my stiff neck came back when on this zith & mepron. I think this means the lyme is really in my CNS and the meds are really making the chetes mad right now.
So the symptoms you are experiecing are probably a big herx and you have CNS inflammation. Hang and there and you WILL make it through this. Don't be afraid to go to sleep. Your body and brain really need the sleep right now. Melatonin helps. If your symptoms worsen when lying down (like mine did due to increased pressure on the spine) I would try sleeping in a recliner or semipropped with pillows.
You REALLY need to keep your LLMD updated with what is going on or at least call and talk with the nurse. They might be able to give you some specifics for you. Don't be embarrassed to tell them you are afraid you are dying and they will know how scared you are and how much of a change your condition is going through.
(By the way - I went through all of this with Mepron and Zith alone.... i haven't even tried Art yet but I think since having this severe of herxes I will hold off on the Art for quite some time.)
Hang in there and feel free to pm me.
-------------------- Some day, this mamma's gonna dance! Posts: 199 | From here | Registered: Apr 2005
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I disagree with your statements. Babesia can be cerebral just like malaria can. If so, main symptoms would be seizure-like problems and muscle twitches and myoclonic jerks.
Eric has mentioned that he had a bad SPECT scan -- he obviously has reduced blood flow to the brain which a babesia herx could exacerbate.
In my opinion he needs to be on heparin or systemic enzymes or something to treat hypercoagultion. May help with herx symptoms or may make them worse. Either way, unless the hypercoagulation is addressed the babesia will be much harder to eradicate in my opinion.
Eric, this is just my opinion, but the majority of hubby's seizure-like episodes and myoclonic jerks seem to have been caused by babesia and not Lyme.
Hang in there. I do not think you have done any permanent damage with either the art or mepron/zith. Sleep will be better than it has been in a long time after the babesia is gone in my opinion.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
If I read you correcty you mention 4 weeks. I have not read all the other reponses but here is something to keep in mind.
When a multiple infection exists, there is a balancing act between the infectious orignisms. It can be a very complex interaction where a combination of antibodies, competition for nutrients ,organism life cycle including auto sequetration into protected parts of the body etc. etc. all combine to change the efficacy of the drugs you are taking.
I assume that you are also taking some other drugs along with artiminisin, it might very well be that adding the artminisin upset the comfortable balance that allowed some of the infections that seem to wax and wain on a 4 weeks cycle to finally be attacked by the other drugs. A silent increase in Lyme after the babesia was kncked down mught acount for this.
If it is lyme related, I have experimented many times trying to see if severity of the 4 week (2 weeks in my case) flareups could be modulated by the changing the dose of drugs when the flareup occured. I have found that if you did not take the drugs before the flareup would have an effect (lesser symptoms)but once it started stoppng the drugs had no effect but did speed recovery from the flare symtoms.This was for shorter halflife drugs.
I dont know if this applies in your case but you might try to stop the art.. If it is a artiminisin toxicity either from long term use of the drug of a contaminated batch, I would think that the the symtoms would clear up. If it is lyme related then based on my self observation I would expect the flairup to continue through to completion with a gradual recovery.
If it is a babesia die off, one would think that you may see some sign of the damaged red blood cells in the urine in the form of dark urine but this is only a guess. Also if the babesia is killed, the neuro symtoms shoudl get better not worse as the babesia parasite causes the RBC to secrete a protien that causes them to stick together. A dead protozoa will not do this so the sticking part would not exist.(in theory)
Thats all I can add right now, just something else to consider.
Posts: 1184 | From north america | Registered: Feb 2003
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Unfortunately hypoxia can be a problem and not show on a CBC or by pulse ox. Dr S has written about this -- don't remember if he was speaking of Lyme or Babesia.
The Dr B explained it to hubby in very clear terms -- babesia makes the red blood cells fat and the cell membranes are stiff -- the infected cells are unable to fold up and squeeze through the capillaries as they normally do.
If the infected cells are in the brain the symptoms would obviously be neurological. If the cells are elsewhere in the body, then the symptoms would be different.
The cause of sweats from babesia is when the infected red blood cells burst as the infection multiplies and the immune system is overwhelmed by the cellular debris and new baby babesia which are looking for new homes. This can occur naturally or as a result of antibiotics/antimalarials.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I'm with Bea on this.
Been there, done that.
We KNOW that there are five times as many babesia parasites in the brain as anywhere else in the body. That's been proven.
Now we take a guy who's been on lyme meds and he's doing more or less OK. Maintaining.
Now we add Mepron/Zith/Art, then stir for a coupla weeks.
Suddenly we got a really messed up neuro guy.
And you think it's the lyme doing it?
I am not following this line of reasoning.
Maybe there's a 5% chance some lyme organisms are being 'freed up' by the antimalarials; but there's about a 95% chance it's the babesia.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Are you taking any other meds like pain pills they can cause some breathing trouble.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
thanks everyone for my concern..i am home now and ok so far..my heart rate is very fast for what i am used too...also the art alone and then the zith and mep threw me a curve ball..i do believe that babs does play a roll in the whole lyme complex..also I know i have very thick blood...i cut my finger off..the very tip and did not bleed very much lucky it all went back ok..i am now going from no startle responce to a very bad startle...so things are changing..the fast heart rate bothers me...thanks all for caring and lets kick wormser *** ... eric
Posts: 593 | From long island ny | Registered: Apr 2006
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posted
quote: -------------------------------------------------------------------------------- Originally posted by david1097: Babesia, when it infects a RBC causes the RBC to secrete a protien that casues the RBC to stick to the vascular wall, and to other RBC's. This can gum upsoem of the timy viens that are in the brian and infect in cattel with bovine babesia, thier brains are very read from being so clogged up(seen when they are dead of course). --------------------------------------------------------------------------------
David,(and others)
have you read this latest Australian study re Babesia? opinions?
Malar J. 2006; 5: 69. Published online 2006 August 4. doi: 10.1186/1475-2875-5-69. Copyright � 2006 Clark et al; licensee BioMed Central Ltd.
Absence of erythrocyte sequestration in a case of babesiosis in a splenectomized human patient Ian A Clark,1 Alison C Budd,1 Gunther Hsue,2 Bret R Haymore,2 Alina J Joyce,2 Richard Thorner,3 and Peter J Krause4
1School of Biochemistry and Molecular Biology Australian National University, Canberra, ACT 0200, Australia
Conclusion This first report on the vascular location of B. microti in human tissue suggests that severe multi-organ failure due to babesiosis ***is independent of sequestration of parasitized erythrocytes. (...) **** complications of human B. microti infection could, therefore, prove to be mediated by the ****same inflammatory processes as are accepted for bacterial sepsis and severe influenza [12]..
Posts: 416 | From france | Registered: Oct 2001
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posted
POLAR BLAST - same thing. I was on Mepron and zithromax. My ears hurt right before my brain registerd the phone rang. I went to the hospital after I lost bladder control. My temp was 95.4. Doc is toying with herx or Mepron toxicity. Thyroid was out.
I didn't sleep for 4 days I felt that someone was jumping out and saying boo - extra adrenaline rush. I thought I was having a seizure.
But I wasn't. Doc is changing meds and now wants me to try iv antibiotics in a few weeks. I was getting really upset because I thought I was going die and not see my family again. I still don't feel out of the woods,I have been and tremors everywhere. Really tight in my chest. A bit of tachycardia. This has been going on since Thursday for me.
Posts: 298 | From Maine | Registered: Jan 2004
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posted
I slep last night and this morning feel a little better..the sleep is kind of funny..i have to sleep on my side..i am going to try to get an mri today...hope it is all ok... eric
Posts: 593 | From long island ny | Registered: Apr 2006
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posted
Hi Eric- sorry to hear what you are going through. I know it's scary. If it's any consolation, when I got sick in July of 05 and didn't think it could get any worse, it did soon after I started my antibiotics and started to "herx." I had a few bad episodes and one in particular where I was in my bathroom and my legs would no longer even hold me up, my heart was beating so fast, I couldn't breathe, and yes I thought I was going to die. I was talking to God at that point and telling him to please take care of my kids.... It was that bad. So although I don't know exactly what you are going through, I know that feeling. Well, I got through it and only had one or two more that were that bad. That was over a year ago, and I'm still around! Not completely better by far, but much better than I was so that's a great thing. YOU hang in there! Natalie
Posts: 87 | From Clarksburg, NJ, Monmouth | Registered: Aug 2005
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