Posted by bleauberry on December 21, 2018, at 7:43:40
In reply to Re: Clomipramine: What are your experiences?, posted by Martinchen978 on December 19, 2018, at 15:46:39
> How did you cure your lime disease? How did you diagnose it? (I've read that is quite difficult to cure the longer you are infected by it...)
>
> I agree with the SSRI stuff. It mostly numbs...To be accurate I would say my Lyme is in remission but not cured. There is a lot of mystery with tick bite diseases and syndromes. For example, why do flare-ups still happen with some people after they have gotten better? I'm like that.
Diagnosis is easy with the right doctor. It is purely 100% the choice of doctor that makes the difference. The vast majority of them are not well educated on the intricacies of tick born infections, how to properly diagnose, or how to properly treat. Most doctors have their hands tied by CDC guidelines, fears of lawsuits, and regulations of the hospital systems they associate with. A minority of doctors have had Lyme disease themselves. These are the doctors who often become experts.
The diagnosis is mostly a clinical one, performed by the experienced questioning, hands and eyes of an expert doctor. They are often referred to as L.L.M.D. - Lyme Literate Medical Doctor. I also have an L.L.N.P. - nurse practitioner formally trained through seminars, other doctors, and organizations specifically for lyme diagnosis and treatment.
Symptoms usually come in identifiable clusters. Some patients have symptoms clustered around arthritic-like symptoms, while others are mostly psychiatric, and then some are weird like skin issues, digestive issues, muscle issues, tremors and shakes - but in all cases, if you question the patient from head to toe, you find there are more issues than they mentioned. LLMDs can pretty much make an accurate educated guess simply based on your "clusters of symptoms". There are recognizable patterns. For example, right now in real time, my patterns suggest that my ongoing residual battle is because of the stubborn co-ifection of lyme called Bartonella - which is mostly psychiatric in its presentation. It also comes from cat bites and scratches.
I got a lyme bullseye rash once from a mosquito bite. So I know for a fact that ticks are not the only carriers of these germs.
Testing is pathetic. The reason I was so sick for so many years is because a doctor looked at me across his desk and said, "I'm happy to inform you that your Lyme lab test is negative and you don't have Lyme". That's the same thing as a kiss of death or an innocent prisoner being locked into a torture dungeon. No one knows the actual accuracy rate of lab testing but they are roughly 30%-60% accurate. They destroy lives through misdiagnosis and I am a walking example of that who survived.
The best test out there is called Western Blot. It is expensive but it is worth it if someone wants a clearer picture of the landscape.
History of where you have lived, hobbies, known or unknown tick bites, and symptoms and timelines - these all come into play for a clinical diagnosis.
Doctors taught me the best diagnosis. That is, you start treatment and see what happens. Because if you have lyme, then there is a distinct pattern of behavior that happens at the beginning of treatment. A. simple "try it" experiment is the best diagnosis. If you have lyme, it will tell you.
The pattern goes like this. You start a couple or several herbs commonly suggested to treat lyme. Or you start an antibiotic such as doxycycline or azithromycin. Then keep track, almost hour by hour, how you feel, for the next week. My doctor had me keep an hourly diary for a few days. Somewhere in the day 1 to day 3 range, you may experience feeling better than you have in a while - maybe you're actually doing that vacuuming you've been putting off for weeks, or maybe actually laughed at something, or just generally not as bad as usual. But the honeymoon is short-lived. Between day 3 and day 7 there can be a crash that ends up being worse than where you started! If that happens, you just diagnosed Lyme disease.
Another poster here named Jereon has experienced this pattern. He has felt it. I have, as well, multiple times. It was the primary confirmation my doctor used for his clinical diagnosis of me.
And then you resume treatment except backing off to lower doses and slowly ramping up.
The pattern explained: The herbs or antibiotics will at first stun or paralyze the bacteria - their usual daily routines come to a halt - but they aren't dead yet. This is the phase when the patient says they felt improvement. And that makes sense. But then the bacteria start to die, by the millions and billions. The body is flooded with dead bacteria, their body parts, their endotoxins, their poop and pee. This triggers a massive immune response which results in you feeling like absolute crap, very similar to how the flu bug makes you feel. This is called a Herxheimer reaction, or a die-off reaction.
So that's a solid diagnosis. Most people don't realize that this is something you can do cheaply and safely on your own without even a doctor. But I strongly suggest finding an LLMD because the waters are treacherous during treatment and you need their experience in antibiotic choices. They usually do 2-3 antibiotics at the same time and rotate them around every couple months or so. Improvements are seen 9 months and after. It took me 3 years of antibiotics and herbs to reach remission.
Most of the wisdom on all this that I have gathered came from:
Two LLMDs that treated me successfully
One LLNP currently
Book - The Herbal Treatment of Lyme disease, Stephen Buhner
Book - Why Can't I Get Better?, Horowitz
Authors of expertise: Burrascano MD, Marty Ross MD, Bill Rawls MD.Try doing a search on "the psychiatric manifestations of Lyme disease".
Anyway, this is all bizarre to most people who encounter it for the first time. It was totally bizarre to me too.
Prozac+Zyprexa+Adrafinil kept me functioning and fairly stable for several years during misdiagnosed lyme. But eventually the disease overwhelmed those meds, they pooped out, and eventually I got the right diagnosis.
Get this. After seeing 12 specialists over 15 years, spending over $120,000 on doctors, tests and prescriptions, failing 12 sessions of bilateral E.C.T., it was actually a freaking nurse who uttered, "gee I wonder if you have Lyme disease".
And the rest is history. At the time there were no LLMDs in my state. I researched online and located 2 in a neighboring state. The long drives every month were well worth it. They saved my life. I was going to be dead of psychiatric suicide or heart attack, one or the other (lyme loves heart muscle).
My LLMDs told me that 9 out of 10 of their new patients come mismanaged from other doctors and that almost all of them are on psychiatric meds for psychiatric issues. And that most of them are not on psych meds anymore, or at greatly reduced doses, after lyme treatment has succeeded. The one med that can still help me function productively as if I had never been ill all those years is Ritalin. I'm asking for it at my next appt. Ritalin is very good for Lymies.
poster:bleauberry
thread:1102490
URL: http://www.dr-bob.org/babble/20181024/msgs/1102551.html