Alice Posted December 7, 2012 Report Share Posted December 7, 2012 HiIn 2008 I went to Costa Rica, a fieldstudie trip with my Biology class.When I came home I found out I was infected by Leishmania.May 2008 they treat me with Amphotericin B and a lot of antihistaminics (because I react allergic to Ampho B ). This treatment stole almost my whole life. I was very tired (slept for 16 - 18 hours a day) and I was forced to quit school. Begin 2009 I had to make some money so I found a job at a Blood collection center, 16 hours a week. I could manage it, but it was harsh.December 2010 I expand to 28 hours, until september 2011. I collapsed at work (BP 170/120 HR 150) and the doc at work send me home ("O, missy you just have to much stress"). I never recovered since then, it all get worse. April this year they put me on the famous (or shout I say notorious) TTT. And there was the diagnose: POTS. HR 70 -> 130.Are there some people here who recognize my story or the meds they gave me in 2008? Quote Link to comment Share on other sites More sharing options...
Guest Hugues SC Posted December 8, 2012 Report Share Posted December 8, 2012 Hi,I can't relate to the medication for parasites, but i'm thinking if they gave you a lot of anti-histamines and for a long period, this might have started something, since it probably affected your HPA axis a lot (it might have lower hormones in your brain that start to stimulate other hormones etc. ) this probably did not help even though it kept you from having the allergythings like your blood pressure and blood volume might have been affected by the anti-histaminesI cannot tolerate 2 days on an anti-histamine that crosses the blood brain barrier, I end up lying down and can,t move, seems like it completely shuts down where "things" start in your brain, this is why most anti-depressants or meds for anxiety are anti-histaminesThis is just my first impression, I might be totally wrong, even more since you mention High blood pressure 170/120, I think normally, lowered HPA function would have given you low blood pressure, there might be something else since I really don't see where the high BP comes from.people who are hypothyroid sometimes have high BP, your doctor could test thyroid hormones (t4 and t3) to rule out a problem therehope this helps! Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 8, 2012 Report Share Posted December 8, 2012 Well...my dad's dog was just dx'ed with protothecosis (a rare parasitic infection) and the vets want/have to use the medicine you mention. They have told us up front that the medicine can be as harmful as the disease, potentially causing liver and kidney damage. So I guess my question would be, "have you had a thorough evaluation of your liver and kidneys to rule that out as an underlying cause?" Quote Link to comment Share on other sites More sharing options...
corina Posted December 8, 2012 Report Share Posted December 8, 2012 Hi Alice, welcome to the forum. Sorry you have to deal with all that! As I don't know much (if any at all ) about Leishmania and the way it's treated I can't help you at all. Hope others can! Good luck on your yourney to better health! Quote Link to comment Share on other sites More sharing options...
E Soskis Posted December 8, 2012 Report Share Posted December 8, 2012 I'm no expert - don't know a lot about parasitic infections but, do know a little about amphotericin - it is such a powerful drug that it can really mess up some major organ systems - including cardiovascular and neurovascular systems - it is a catch-22 when putting someone on this type of drug....the docs have to decide if the infection will do more damage than the drug if left untreated - I suspect that without the amphotericin, the parasitic infection would have progressed and eventually threatened your life hence, the decision to give you the toxic amphotericin. Quote Link to comment Share on other sites More sharing options...
westernmass Posted December 8, 2012 Report Share Posted December 8, 2012 I have done some traveling in South America (costa rica and Peru) and although I don't remember getting sick at the time (except actually in Peru) every once in a while I wonder if I picked up whatever is causing my pots there.How did you know you'd been infected- what were your symptoms? Did you get very ill? Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted December 9, 2012 Report Share Posted December 9, 2012 Hi alice,Sorry to hear you're dealing with this. While I don't have experience with with exactly the same parasite you had or your treatment I have been treated simultaneously for parasites and h pylori. I had orthostatic intolerance prior to getting these but they made it so bad I could barely stand up. Assuming that your treatment killed all your good pathogens have you tried taking strong probiotics, s boulardi and eating raw gently washed organic fruits and veggies. By gently washed I mean remove the critters you can see but don't soak or actually wash off the good pathogens found on raw organic fruits and veggies. Organic meats are safer too. My h pylori and parasite treatment left me feeling puny for a few months until I took 2 Metagenics probiotics and 1 s boulardi daily for a week - month ? You may respond quicker. I actually had a freind respond totally to taking only 1 probiotic once. Color me jealous .. Lol ... You may need to treat for candida overgrowth too. I used Candidase, virastop, several candida killers, Candida diet, and probiotics. Fwiw, I didn't know about s boulardi at that time and I have no idea if it would work but it might do the trick. It's known to take over. Go slowly and watch for allergic reactions to anything of course. I still have oi but it's responding to mast cell / allergy meds. I've been disabled / mostly couchbound for 23 years tho. Tc .. D Quote Link to comment Share on other sites More sharing options...
issie Posted December 10, 2012 Report Share Posted December 10, 2012 Katie,If your dog has it ---there is a chance that humans can have it too. Something to look into.Hughes,People that have mast cell issues have to take anti-histamines. There are actually POTS docs that are RXing this to us now. It helps me to be more hydrated and have less issues with my veins leaking fluids out into the tissues. There are some closely related HyperPOTS things that addressing Mast Cell issues seems to be helping in my behalf. We are all so different and what one person can do ---another can not. It will also depend on which anti-histamines you take. Some are not tolerable and others may be. Some of us have to only take 1/2 or 1/4 of a pill ---or it's too much. Thankfully, doctors have started to put us into sub-classes and that will make it much easier for us to receive the proper treatment. There is not one size fit all when you are talking about dysautonomia.Issie Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 10, 2012 Report Share Posted December 10, 2012 issie,It is an algae that has become parasitic and is not transmissable from person-person, animal-person, etc. You have to ingest it through water or soil. Good news cause this stuff and its treatment all sounds BAD!! Turns out the dog may not have it, btw. Katie Quote Link to comment Share on other sites More sharing options...
issie Posted December 10, 2012 Report Share Posted December 10, 2012 issie,It is an algae that has become parasitic and is not transmissable from person-person, animal-person, etc. You have to ingest it through water or soil. Good news cause this stuff and its treatment all sounds BAD!! Turns out the dog may not have it, btw.KatieThat's good for both the dog and it's owners. Issie Quote Link to comment Share on other sites More sharing options...
Alice Posted December 11, 2012 Author Report Share Posted December 11, 2012 They told me the same before I received the meds. But there was no other cure. They never tested my kidney and liver rates back then, but now they are normal. My FT4 T3 and TSH are also normal.Well...my dad's dog was just dx'ed with protothecosis (a rare parasitic infection) and the vets want/have to use the medicine you mention. They have told us up front that the medicine can be as harmful as the disease, potentially causing liver and kidney damage. So I guess my question would be, "have you had a thorough evaluation of your liver and kidneys to rule that out as an underlying cause?" Quote Link to comment Share on other sites More sharing options...
Alice Posted December 11, 2012 Author Report Share Posted December 11, 2012 Hi WesternmassI wasn't ill, but I found two little 'mosquito bites' on my arm that didn't recover. So I went to my docter, who worked for Docters without Borders a couple of years before, and he recognised the typical infection. Leishmania could be a life threatning disease, that's why they gave me the amphotericine. I have done some traveling in South America (costa rica and Peru) and although I don't remember getting sick at the time (except actually in Peru) every once in a while I wonder if I picked up whatever is causing my pots there.How did you know you'd been infected- what were your symptoms? Did you get very ill? Quote Link to comment Share on other sites More sharing options...
Katybug Posted December 11, 2012 Report Share Posted December 11, 2012 Well, not that POTS is fun, but at least your organ function has been checked and is normal. That's a positive! Quote Link to comment Share on other sites More sharing options...
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