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Nature Boy
Stranger than most



Registered: 07/09/07
Posts: 8,241
Loc: Samsara
Last seen: 2 months, 5 days
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Quote:
LizardWizard said: Thank you for your contribution Nature Boy. Are you doing well these days? Full recovery?
Edit: And nice to have a physician on the boards!
Surgeon (retired) actually.
No, I'm not back to baseline. Still have almost daily knee and back pain, and (subjectively) I still have what I feel to be mental deficits which manifest as word-finding difficulty/delays, memory issues (mostly names) and the occasional olfactory hallucination (I smell cigarette smoke and other things not there) which happens about 1 x per week.
The whole sordid story is pretty fucked up. I glossed over the assholes (the nurse practitioner in my wife's doctor's office) who failed to properly obtain the results of the blood they drew (somehow got sent out of state) and the attendant delay in the diagnosis - particularly important as to the Lyme and Babesiosis - such that the Lyme spirochete was allowed to get across the blood-brain barrier and into the immunologically privileged brain and spinal fluid by the delay, further complicating my treatment. Also, the delay in diagnosis of Babesiosis permitted the further engorgement of my spleen that was on the verge of rupturing the capsule which would have killed me on the spot.
I've been told I could sue those morons (as a medical professional the idea is abhorrent to me) for medical malpractice - but IMHO that would be bad karma, so I have not done so, although the statute of limitations has not run, so I still could if I change my mind. Every time I get a monster bill for medical care it inflames my anger and makes me want to sue those bastards, though.
Bottom line, Lyme disease is no joke. Very much more serious a disease than ever I knew. Lesson learned - the hard way.
N.B.
-------------------- All submitted posts under this user name are works of pure fiction or outright lies. Any information, statement, or assertion contained therein should be considered pure unadulterated bullshit. Note well: Sorry, but I do not answer PM's unless you are a long-time trusted friend. If you have a question, ask it in the appropriate thread.
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LizardWizard
GnomeGrower




Registered: 01/07/15
Posts: 13,688
Loc: the parking lot
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Re: The Lyme Disease Thread. [Re: Nature Boy]
#24413273 - 06/17/17 06:40 PM (6 years, 7 months ago) |
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Surgeon, wow! Always been told it takes a special kind of person to be a surgeon..
I can relate to the not being back to baseline, I consider myself to be far from it though I always also keep an optimistic view on where I stand healthwise. I also have the olfactory hallucinations (gas, iron and copper smells, sometimes sweet smells), at least that's what I think, but only about once or twice a month. The word-finding thing is a big issue too. Word mix-ups too, now that's pretty much gone, but at my worst it was aweful. And it definitely feels a bit different than normal word-finding issues or slipping out the wrong word or things like that, with the olfactory hallucinations too. I had a few epileptic seizures, one full blown, and a few minor ones that I only recognized as such once I knew what they were. The eerie "funny/off" feeling before a seizure for me is the kind of feeling the word-finding feeling is reminiscent of. I have stings all over my body regularly, not real stings, just "imaginary", so neurological fuck-ups (although that's probably not how you would call it ) and bad knees and sometimes elbows, wrists, fingers, ankles,... And muscles, and fatigue. And the occasional inflamed gall bladder. Now that I'm taking an autovaccine (vaccinations made from my own blood) the gall bladder and fatigue have gone far worse for a while, luckily (knock on wood) the gall bladder issue has gone away again since last week..
-------------------- The best things in life can be smelled on one's fingers.
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moonrockmushy
High on Spite



Registered: 07/01/05
Posts: 19,067
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Hey lizard, thanks for the link. I have a thread I made about lyme and ticks a while back which I'm guessing is the reason I am here. Here it is if anyone wants to read: https://www.shroomery.org/forums/showflat.php/Cat/0/Number/14587195
My experience with Lyme is multiple uncomformed diagnoses (four now?). I never "tested positive" but as I understand it a positive diagnosis requires like a certain number of positive spirochete indications and I only had a limited amount. Like one test I had like 3/4 or 4/5 or something, so it was declared negative.
I got really sick from Lyme at one point, I mean I live in the woods in a very well documented Lyme area, and got alot of tick bites, it was normal my whole life. I was diagnosed several times based on the rashes, and after the first time where I got the worst fever I ever had it was really just a general malaise and rash. I do have arthritis and joint problems to an extent, but I mean I'm 32 now and I think that is somewhat normal. It's more than manageable. I do wonder what mental issues I have that I can blame on Lyme, but I mostly just assume that is me in general, and I don't really suffer that much from it.
Like I have survived drug addiction and show up at work every day and am generally pretty stable. I think Lyme is definitely a thing and I believe it can be debilitating, but for me it is not. It's just a bacteria that my body is perpetually fighting off, and I'm sure it can come back in bite me in the ass but in the end you can't really avoid it here. All my dogs and all of the domestic animals that spend time outside here get it, and we do ok. I am not really sure how much a/b treatments help and I don't really know why it is so bad sometimes, but it's not like anything new in my opinion it's just a common illness where it exists.
The reason I made that thread is if you are like an outdoor mushroom hunter or weed cultivator it's very likely you will get it. I think it is poorly understood and at least when I was doing research there is not much information. I would like to know more so I am definitely interested in being part of this discussion.
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JacksonMetaller
Stranger

Registered: 03/13/11
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Hey nature boy, didn't realize you were in the medical practice. Make sure you tell all your MD buddies, they treat this stuff like a joke. I've had Lyme disease for almost 3 years now which is why i pretty much stopped coming on these boards. My story wasn't quite that fucked up but i did have plenty of doctors and nurses i could have slapped into oblivion. Telling me things like "Lyme disease doesn't exist in the South" and allowing me to go into late stage without proper treatment. I believed them at the time and only reinvestigated the issue a year and a half later. I tested positive for babesia and ehrlichia too but don't really have obvious symptoms of those. My primary symptoms are small fiber neuropathy, arthritis, myalgia and carditis and then all sorts of idiosyncratic things that just sort of come and go. Been doing Stephen Buhners protocol the past few months with great success. Highly recommend giving it a look for anyone suffering long term who can't get appropriate care.
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LizardWizard
GnomeGrower




Registered: 01/07/15
Posts: 13,688
Loc: the parking lot
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If you want, I can lend you my experiences with those complaints, and check my medicinal mushroom book on what medicinals could be good for you.. Buhners is definitely a good protocol! Of course, as with all lyme treatments, it doesn't work for anyone. But def a solid amongst the many treatments!
-------------------- The best things in life can be smelled on one's fingers.
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JacksonMetaller
Stranger

Registered: 03/13/11
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Last seen: 1 year, 1 month
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The thing with Buhners protocol is that the condensed form you find online is not his actual protocol. His protocol in his book is much more flexible so that it CAN work for everyone. In essence his protocol is more of a method for approaching complex diseases with complex treatments rather than a specific prescription. The specific treatments he recommends are only the ones he says work for the majority he's worked with not necessarily ones he believes will work for everyone. I definitely recommend his books for anyone starting out for that simple fact. I used to be a real skeptic and had no idea the sheer complexity of plant medicines. But Buhner converted me. Some of his recommendations didn't do much, others worked too well. And i've seen people go the other way
If you want to i won't stop you I gotta say though, i've tried a lot of things for those symptoms and the only thing that seems to work is straight up killing the damned thing.
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LunarEclipse
Enlil's Official Story


Registered: 10/31/04
Posts: 21,407
Loc: Building 7
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A friend has bartonella symptoms. It's bad we got her doxycycline I hope that works. These spirochetes are bad news. Fuck doctors fuck the medical system it took a lot of effort to even get a prescription for the antibiotic. These bacteria are killers and as usual the doctors don't know JACK SHIT.
-------------------- Anxiety is what you make it.
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LizardWizard
GnomeGrower




Registered: 01/07/15
Posts: 13,688
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That's good to know on the Buhners. I was actually thinking, when I visited his site "this program is good, but it could be better if it was made tailored..." 
Let's give it a go then, shall we?
Quote:
My primary symptoms are small fiber neuropathy, arthritis, myalgia and carditis and then all sorts of idiosyncratic things that just sort of come and go.
With those symptoms, I would definitely give medicinal mushrooms a go. For the arthritis, use Harpagophytum capsules, and if you are low on magnesium the best way to take it is make a spray or drops out of Nigari and water (look for it online, it's used in tofu production). You'd have to calculate the number of drops to a comparable amount as pills would contain, but it doesn't contain magnesium stearate, which fucks with magnesium, calcium and zinc uptake. Also, maybe consider buying a near infra-red light (NIR) for the arthritis on the bad days. I've built one myself, all you need is a 250W NIR bulb and a brooder clamp if you want to keep it simple. I made mine with an wooden arm system, so it's screwed to the wall next to my couch, so I can just point it wherever I want too, either sitting under it, or laying under it. It's also very good to bring down inflammation. Don't use it prior to bedtime, it fucks with your sleep hormones. Try a search for "NIR light health benefits". There's also portable NIR sauna's, which is basically 5 of those 250W bulbs in a wire rack or something. Very good for detoxing! The single bulb will detox from tissue as well, but for a real good detox effect, I would use multiple lamps.
The medicinal mushrooms can be used fresh, dried, and in supplement form. Suplement form is easiest, fresh or dried you would have to make a soup from it, that you can freeze in small daily portions if you like. That's the Traditional Chinese Medicine way, although I'm not sure if they would allow freezing it. I don't think there's a real issue with that though, but maybe I'm wrong. I would recommend these (not all are easily obtained fresh or dried):
Agaricus Blazei Murill
Hericium Erinaceus
Auricularia Auricula Judae
Cordyceps Militaria or Sinensis
Reishi
Shiitake
If you want you can take them all together, but I would start with one kind and than add another 3 days later, taking one of each every day. This would be the order of taking them that I would think would work best for you: Auricularia Agaricus Cordyceps Hericium Reishi Shiitake
There's a lot of difference in brand quality, I know Hanoju to be a very good quality brand, but it's the only I've tried. The reason why you don't want to go at them all at once is because not everyone reacts well to every mushroom. The reason for that specific order is because of your symptoms and my guessing at your body derived from those symptoms. If you notice any adverse reaction, stop using the one you last introduced, and keep using the rest, and see how it goes. If it's all good for the next couple of days, leave that one and add the next one.
For your idiosyncratic stuff, visit your local health store and ask for Umeboshi plums. Take one each day, and be ready for a heft taste. You could also ask for Kuzu starch with that, and good quality Tamari. With those 3 ingredients and water, you can make the most medicinal macrobiotic tea (has more of a soupy feeling actually) there is. Drink it daily for exquisite health and long age. I should start drinking it too actually. Don't add sugar to this "tea". If you want, I'll write up how to make it step by step. Be prepared for a nice price tag on all I just mentioned, it'll probably cost you about 150-250 bucks for all those supplements. It's good, powerful stuff though.
-------------------- The best things in life can be smelled on one's fingers.
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eeso
Str@nger

Registered: 03/25/07
Posts: 554
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"Chronic Lyme Disease" is not a thing. Lyme can leave lasting symptoms but once you wipe out the pathogen with a course of antibiotics you don't still have Lyme Disease.
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LizardWizard
GnomeGrower




Registered: 01/07/15
Posts: 13,688
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Re: The Lyme Disease Thread. [Re: eeso]
#24438585 - 06/27/17 06:53 AM (6 years, 6 months ago) |
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Go elsewhere. Please do. Fuck off. You have no clue what you're talking about.
-------------------- The best things in life can be smelled on one's fingers.
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LunarEclipse
Enlil's Official Story


Registered: 10/31/04
Posts: 21,407
Loc: Building 7
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Quote:
LizardWizard said: Go elsewhere. Please do. Fuck off. You have no clue what you're talking about.
Friend with the apparent bartonella infection has the symptoms and the odd rash. The doctor looked up online and had to agree that she needed a course of antibiotics.
BUT what seems apparent from my looking into it is that it's very hard to kill and with antibiotics the success rate isn't that great. Still, she got bit by a flea? and a tick as well. No testing has been done but the doc gave her the doxycycline 100 mg 2x a day for a month. Guess time will tell but I don't think this is a slam dunk like maybe getting rid of a urinary infection etc.
Anyway I don't know much either so if you have any thoughts based on my comments understand I'm not a doctor just trying to help her.
-------------------- Anxiety is what you make it.
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JacksonMetaller
Stranger

Registered: 03/13/11
Posts: 13,361
Last seen: 1 year, 1 month
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Re: The Lyme Disease Thread. [Re: eeso]
#24438623 - 06/27/17 07:33 AM (6 years, 6 months ago) |
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Quote:
eeso said: "Chronic Lyme Disease" is not a thing. Lyme can leave lasting symptoms but once you wipe out the pathogen with a course of antibiotics you don't still have Lyme Disease.
People who take this stance usually use appeals to authority to back it up i've noticed. It's worth noting that the IDSA who wrote the guidelines was federally investigated for conflicts of interest to which numerous were found. Chief among the complaints of the investigators were that the head panelist Gary Wormser had purposely rejected applications from prospective panelists who have were in favor of the chronic lyme disease hypothesis and used his homogenous panel to feign "unanimity". He had been telling applicants that the panel was full while he continued to staff others who supported his stance. Gary Wormser and his inner circle of prestigious buddies are the primary opponents of the chronic lyme hypothesis. The literature they published is difficult to read as its taken on a near religious tone at times. Wormser and pals theories of autoimmunity are no more substantiated than those of chronic infection and his critiques are getting more and more desperate and less coherent with modern trends in bacteriology in general. The evidence really is swaying in favor of chronic infection if you look at the big picture of what's going on in microbiology coupled with the work done on Lyme. There are numerous well conducted studies supporting the notion of chronic infection. The best among them is Hodzics work in my opinion. He's done several studies in different animal models showing persistence after treatment http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0086907
The important fact here is that Wormsers nonsense was able to pollute the entire healthcare system with a biased perspective on Lyme disease because they depend on the very guidelines he constructed. To the contrary there is NO evidence that 30 days doxycycline can eradicate the infection. In fact, such a stance hinges on unsound logic conflating absence of evidence with evidence of absence. This is not just philosophical nitpicking. It is particularly relevant when talking about parasites that are fastidious, exist in low copy number, are pleomorphic, and may spend much of their life cycle embedded in biofilm or intracellular niches. They are VERY difficult to find in the chronic phase and one can never assume that the investigators failure to find them reflects eradication.
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LunarEclipse
Enlil's Official Story


Registered: 10/31/04
Posts: 21,407
Loc: Building 7
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So are you saying two weeks into infection should or should not be given a month of doxycycline? If not, what should they be doing? This thread as well has taken on a bit of a nasty tone, I'm only looking for information so I can maybe help a friend. What is the best treatment? Hope it goes away in time? That may actually be the smartest thing, perhaps. You are right the information given to the medical profession is garbage, they basically pooh pooh the idea someone could have lyme or in her case bartonella which actually seems worse from my research into it than the lyme although it's possible she has both. For some reason the connection is there as to coinfection but no connection (or once again, pooh poohed) with a tick bite.
-------------------- Anxiety is what you make it.
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JacksonMetaller
Stranger

Registered: 03/13/11
Posts: 13,361
Last seen: 1 year, 1 month
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Oh and LizardWizard i did not skip your suggestions! Thanks for them. It will take me a moment to digest it. I'm really sensitive to all forms of treatment so i've had to start in small doses of individual things and work up slowly to get where i am now. So if i use those it will probably be in the future. But i would like to explore mushrooms further.
Lunar
"That may actually be the smartest thing, perhaps"
No that would be the worst thing to do. The success rate is contingent on early treatment. At least for Lyme the reasons being that the spirochetal phase converts to a dormant phase post-dissemination which is refractory to bacteriostatic drugs like doxycycline. Bartonella is not related to Lyme however. Being parasitic it may have similar strategies but it may also differ. A lot of people say that bartonella is bad as a coinfection of a tick bite. Typically bartonella is considered relatively benign. I don't know if there is a true distinction between benign and virulent forms or whether it's a medical oversight or whether it's just Lyme patients fear-mongering. These aren't simple issues. But i would certainly take the prescription as advised. I would only worry about what to do next if you're friend is still suffering afterwords. It very well may be eradicated in a month. Even Lyme can be in many cases if treated early.
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LunarEclipse
Enlil's Official Story


Registered: 10/31/04
Posts: 21,407
Loc: Building 7
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Quote:
JacksonMetaller said: Oh and LizardWizard i did not skip your suggestions! Thanks for them. It will take me a moment to digest it. I'm really sensitive to all forms of treatment so i've had to start in small doses of individual things and work up slowly to get where i am now. So if i use those it will probably be in the future. But i would like to explore mushrooms further.
Lunar
"That may actually be the smartest thing, perhaps"
No that would be the worst thing to do. The success rate is contingent on early treatment. At least for Lyme the reasons being that the spirochetal phase converts to a dormant phase post-dissemination which is refractory to bacteriostatic drugs like doxycycline. Bartonella is not related to Lyme however. Being parasitic it may have similar strategies but it may also differ. A lot of people say that bartonella is bad as a coinfection of a tick bite. Typically bartonella is considered relatively benign. I don't know if there is a true distinction between benign and virulent forms or whether it's a medical oversight or whether it's just Lyme patients fear-mongering. These aren't simple issues. But i would certainly take the prescription as advised. I would only worry about what to do next if you're friend is still suffering afterwords. It very well may be eradicated in a month. Even Lyme can be in many cases if treated early.
OK that's what I thought. She figured out what it was and I pushed for the antibiotics. The doctor would have never done that, he tried to call it a muscle strain. Anyway thanks for laying that out, and good to hear we are on the right track.
-------------------- Anxiety is what you make it.
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LizardWizard
GnomeGrower




Registered: 01/07/15
Posts: 13,688
Loc: the parking lot
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Hey Lunar, wasn't talking to you, that was for eeso.
-------------------- The best things in life can be smelled on one's fingers.
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LunarEclipse
Enlil's Official Story


Registered: 10/31/04
Posts: 21,407
Loc: Building 7
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Quote:
LizardWizard said: Hey Lunar, wasn't talking to you, that was for eeso.
No I understand that Lizard and I understand your frustration.
-------------------- Anxiety is what you make it.
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LizardWizard
GnomeGrower




Registered: 01/07/15
Posts: 13,688
Loc: the parking lot
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Quote:
JacksonMetaller said:
Quote:
eeso said: "Chronic Lyme Disease" is not a thing. Lyme can leave lasting symptoms but once you wipe out the pathogen with a course of antibiotics you don't still have Lyme Disease.
People who take this stance usually use appeals to authority to back it up i've noticed. It's worth noting that the IDSA who wrote the guidelines was federally investigated for conflicts of interest to which numerous were found. Chief among the complaints of the investigators were that the head panelist Gary Wormser had purposely rejected applications from prospective panelists who have were in favor of the chronic lyme disease hypothesis and used his homogenous panel to feign "unanimity". He had been telling applicants that the panel was full while he continued to staff others who supported his stance. Gary Wormser and his inner circle of prestigious buddies are the primary opponents of the chronic lyme hypothesis. The literature they published is difficult to read as its taken on a near religious tone at times. Wormser and pals theories of autoimmunity are no more substantiated than those of chronic infection and his critiques are getting more and more desperate and less coherent with modern trends in bacteriology in general. The evidence really is swaying in favor of chronic infection if you look at the big picture of what's going on in microbiology coupled with the work done on Lyme. There are numerous well conducted studies supporting the notion of chronic infection. The best among them is Hodzics work in my opinion. He's done several studies in different animal models showing persistence after treatment http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0086907
The important fact here is that Wormsers nonsense was able to pollute the entire healthcare system with a biased perspective on Lyme disease because they depend on the very guidelines he constructed. To the contrary there is NO evidence that 30 days doxycycline can eradicate the infection. In fact, such a stance hinges on unsound logic conflating absence of evidence with evidence of absence. This is not just philosophical nitpicking. It is particularly relevant when talking about parasites that are fastidious, exist in low copy number, are pleomorphic, and may spend much of their life cycle embedded in biofilm or intracellular niches. They are VERY difficult to find in the chronic phase and one can never assume that the investigators failure to find them reflects eradication.
Quote:
JacksonMetaller said: Oh and LizardWizard i did not skip your suggestions! Thanks for them. It will take me a moment to digest it. I'm really sensitive to all forms of treatment so i've had to start in small doses of individual things and work up slowly to get where i am now. So if i use those it will probably be in the future. But i would like to explore mushrooms further.
Lunar
"That may actually be the smartest thing, perhaps"
No that would be the worst thing to do. The success rate is contingent on early treatment. At least for Lyme the reasons being that the spirochetal phase converts to a dormant phase post-dissemination which is refractory to bacteriostatic drugs like doxycycline. Bartonella is not related to Lyme however. Being parasitic it may have similar strategies but it may also differ. A lot of people say that bartonella is bad as a coinfection of a tick bite. Typically bartonella is considered relatively benign. I don't know if there is a true distinction between benign and virulent forms or whether it's a medical oversight or whether it's just Lyme patients fear-mongering. These aren't simple issues. But i would certainly take the prescription as advised. I would only worry about what to do next if you're friend is still suffering afterwords. It very well may be eradicated in a month. Even Lyme can be in many cases if treated early.
-------------------- The best things in life can be smelled on one's fingers.
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LunarEclipse
Enlil's Official Story


Registered: 10/31/04
Posts: 21,407
Loc: Building 7
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Thanks Jackson and Lizard great information. Will see how friend does in a month. She was in severe pain and having a lot of symptoms so I don't think it's as "benign" as you do. Seems pretty aggressive for her to feel the need to go to the ER just hoping not to die.
-------------------- Anxiety is what you make it.
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JacksonMetaller
Stranger

Registered: 03/13/11
Posts: 13,361
Last seen: 1 year, 1 month
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Quote:
LunarEclipse said: Thanks Jackson and Lizard great information. Will see how friend does in a month. She was in severe pain and having a lot of symptoms so I don't think it's as "benign" as you do. Seems pretty aggressive for her to feel the need to go to the ER just hoping not to die.
I'm not saying i think it's benign. I'm saying if you open a medical microbiology text that's what it's going to say. They also have a tendency to downplay Lyme disease. So i wouldn't be shocked if it's serious. But you kind of have to walk a fine line here if you want to keep your sanity. On one hand you don't want to fall into conservative mob mentality displayed by most physicians on the other hand you don't want to fall into a liberal mob mentality that Lyme advocates can take on. There's a little bit of truth in both perspectives. There is something to learn about the potential severity of these diseases but at the same time we still have to remember that many people do survive them. Your friend should seek the standard of care before turning towards alternatives and especially in a crucial period like the early stages. That's all i really meant. I would never downplay any of these illnesses. The virulence of a bacteria can change even in a few generations simply by selective pressures. Frequent passage through expanding tick populations would be one such event that would evolutionarily favor the rise of virulent quickly replicating bacteria over those with long latency phases.
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