| T O P I C R E V I E W |
| Effie |
Posted - 09/09/2012 : 07:22:32
Hi all -- I am just checking in and giving myself a reality check . . . I was diagnosed this past Friday with Lyme Disease, after having had a tick bite back in June. I've had some Lyme Disease symptoms, but none were as severe as what I've read about on the Internet, and my doctor caught it quickly and started me on antibiotics. And aside from a few tiny aches and pains, I'm feeling GREAT!
My problem is, I keep reading about chronic Lyme Disease on the internet, and I have a co-worker who was recently diagnosed with chronic Lyme (not by a regular md but by a doctor whom she has had to pay out of pocket). At first I was starting to panic, and I've been getting all kinds of advice from the chronic Lyme support groups I've checked out that my treatment is all wrong and I have to seek help elsewhere (i.e. not treatment by a regular md), or I may end up in pain the rest of my life. But alternatively, the CDC and a lot of other sites, are calling chronic Lyme a myth, an example of mass hysteria, and just a scapegoat for people who have chronic pain.
Being a 100% dedicated Dr. Sarno believer -- I decided to check in here. I know how I am, and if I start focusing on any pain I'm having, my brain will likely run with it, and I don't want to become one of those chronic Lyme people. Before I found Dr. Sarno, I literally spent thousands of dollars out of pocket seeking help because no regular md seemed to know what was wrong (I'm still paying that credit card bill!!) and I do NOT want to go down that path again!!
I did a search here and only found about three posts about chronic Lyme, and the general consensus seemed to be that it is TMS. I am still thinking about referring myself to an infectious diseases specialist, but other than that, I just want to ground myself and shake off that mass hysteria I can feel building . . . 
I would love to hear anyone's personal experiences or suggestions or comments about this subject -- thanks so much!
~~ Effie |
| 19 L A T E S T R E P L I E S (Newest First) |
| pspa123 |
Posted - 09/12/2012 : 05:15:04
I can empathize with your situation. I saw one of those "Lyme Literate Doctors" for something else and he put sufficient fear in me that I went through some really expensive testing and read many of the websites you are talking about. It was quite overwhelming, even for someone pretty versed in medical stuff. As with so many other things in medicine and perhaps in life, there is nothing approaching a consensus but instead very politicizd disagreement. Generally speaking there is a mainstream camp and alternative camp, with the former belittling the latter and the latter having conspiracy theories about the former. Even the alternative camp does not agree on how to test, or criteria for making a diagnosis, or how to treat. According to the LLDs, almost any symptom at all, in any system, can be indicative of chronic Lyme. It truly seems a black hole. At the end of the day, I was very skeptical of the whole thing. My non-medical conclusion was that, as I didn't have any overt immune system issues, I should move on. |
| Effie |
Posted - 09/12/2012 : 04:58:47
quote:
Originally posted by Wavy Soul
What I notice is how excited and engaged they are now that they have a diagnosis. I can clearly see the distraction theory at work in other people! I try to use them as a mirror!!
Love is the answer, whatever the question
Wavy Soul -- Now that you mention it, I've noticed that, too. I'm going to do that, too -- great advice!! Thanks! |
| Effie |
Posted - 09/12/2012 : 01:01:27
quote:
Originally posted by art
For those who doubt the reality of LYme disease, I'd ask you to consider how sick animals can become. I don't know many dogs with TMS.
Again, in my opinion the real discussion is around chronic lyme. In that area I begin to converge with the prevailing opinion around here.
edit: when a group is united around a single idea, like this one, there's always the danger of groupthink and a kind of blindness creeping in. Truthfully, the notion that acute Lyme disease is a fictional illness is absurd on it's face.
Art -- my dog had Lyme Disease last year, so I definitely agree with you that Lyme Disease is real -- her joints swelled up so bad that she couldn't walk when she got Lyme, she was on antibiotics for a month and recovered quickly and has been fine ever since. I'm actually using my dog as my guide in how to deal with this, because dogs don't get TMS either. They get sick, they get better. Period.
I also agree that there's a difference between actually having "acute" Lyme Disease or "chronic" Lyme Disease -- my lab results were positive on the original ELISA test, which the CDC requires, once the ELISA is positive then they do a Western Blot test - mine was positive on 12 bands in one test and 13 bands in another test. According to the CDC a result like this is strongly positive for recent onset acute Lyme Disease. The difference with the chronic Lyme Disease people, is their original ELISA test comes back negative, so a Western Blot is not done, so they pay out of pocket to a private lab to have a Western Blot done anyway, and when one band on the Western Blot comes back positive, they claim to have Lyme. (They can find doctors who support this diagnosis, but no insurance companies will pay them and they have to pay out of pocket for their diagnosis and treatment.) The CDC says that is not a diagnosis of Lyme, just an indication you might have been exposed to it at one time but got better on their own, naturally. Apparently once you have had Lyme Disease you will pretty much always test positive on at least one band of the Western Blot. My vet explained to me that even though my dog tests positive every time now, the lab can tell whether or not it's an "active" Lyme infection or just an indication that she did have it at one time.
The Chronic Lyme people are telling me that I will NEVER get better with three weeks oral antibiotics (even my coworker who believes she has chronic Lyme is telling me this), that I need to find one of their doctors who will put me on antibiotics long-term, and if I don't do that, and possibly even if I do do that, I will always have Lyme forever and that my life is going to be a nightmare of chronic pain and trying to get help outside the regular medical profession.
Balto: Thanks so much for your advice. That was so helpful. Even though I am definitely taking the antibiotics, I agree with your way of thinking. I've read on the internet that your own immune system can get rid of Lyme, although legitimate Lyme information web sites are few and far between, I believe that is true. I'm going to try to meditate and pray about this and just stay calm. Even though I'm avoiding the chronic Lyme web sites, I still have panic attacks every now and then. Even my daughter in law texted me yesterday that she was diagnosed with Lyme and thinks she has chronic Lyme.
Everyone: Thank you so much for your helpful responses! I love this forum -- you are all so wonderful and I appreciate your help a lot!!!
 |
| lara |
Posted - 09/11/2012 : 11:21:07
I wonder what is Lyme disease in spanish? does someone knows?
Lara |
| tennis tom |
Posted - 09/11/2012 : 11:01:00
quote:
Originally posted by art
edit: when a group is united around a single idea, like this one, there's always the danger of groupthink and a kind of blindness creeping in. Truthfully, the notion that acute Lyme disease is a fictional illness is absurd on it's face.
Art, I'm not dismissing that Lyme could be an actual disease, without being a scientist specializing in it's study I would have no first hand knowledge to venture an objective opinion. I left a window that perhaps 20% of it could be real and I feel that's generous. It's just the tendency of current medicine to arbitrarily lump patients with a complex of symptoms into a currently fashionable category, when doctors don't have a truly scientific dx for something. From my reading of TMS and observations of people, fibro and CFS are TMS and most of Lyme's also.
Yes some things are REAL, but thankfully most are TMS, that's the basis for this board's existence. I remember something Austin Gary used to say, this board's founder, "When you hit yourself on the head with a hammer, that's not TMS". |
| pspa123 |
Posted - 09/11/2012 : 05:07:47
Wavy Soul, some of the forums you refer to -- for example the CFS ones -- can be pretty depressing places, with people searching for ever more atomistic explanations for their condition and endlessly tweaking their supplement regimes and monitoring their reactions. There are some very smart people there, but despite that I often think that approach can't be right. |
| Wavy Soul |
Posted - 09/11/2012 : 01:48:38
I agree with Art that sometimes there is a kind of group-think here which assumes everything is TMS. I have had to ignore this at times. As TT said, we have to take responsibility for ourselves. My health and well-being are not a matter for a committee.
However, I would definitely rather be on a forum with our strong leaning towards the TMS assumption than any of those other forums. What a black hole these diagnoses can be! I am always meeting people who have just been "diagnosed" with chronic Lyme or one or another of the various fashionable explanations I've been given for my "CFS and fibromyalgia" - (of course even those names are fashionable explanations).
What I notice is how excited and engaged they are now that they have a diagnosis. I can clearly see the distraction theory at work in other people! I try to use them as a mirror!!
Love is the answer, whatever the question |
| lara |
Posted - 09/10/2012 : 20:49:57
Hi everyone,
I was infected with one of the worst infectious diseases a mosquito can transmite to humans beings,Malaria. I was diagnosed after seven days of horrible fevers and chills , vomit and headaches. No dr there could believe i made it for seven days without treatment ..i guess it was my great level of fitness or i was simply lucky. But heck no that disease is for real , actually i could felt the parasites in.my blood stream i swear!
One important point is that even tough is a fatal disease my attitude was very positive and i didnt dwell on the bed all day looking for a malaria forum ,instead i kept doing my chores at home and by week three i was running again.
No,not everything is tms but our mental attitude can make a huge difference.
Months later i had another "accident"and this time i was so focused on the pain that i ended in a great nocebo forum for pudendal sufferes...ughh my biggest mistake!
Lara |
| pspa123 |
Posted - 09/10/2012 : 19:46:28
Art, FYI, the corrected email you provided in your profile doesn't appear to work either. |
| art |
Posted - 09/10/2012 : 18:30:07
I agree with that TT to a fair extent. That said, there's an obvious and understandable bias on this forum in the direction of dismissing the chance that's something's real. For those who doubt the reality of LYme disease, I'd ask you to consider how sick animals can become. I don't know many dogs with TMS.
Again, in my opinion the real discussion is around chronic lyme. In that area I begin to converge with the prevailing opinion around here.
TT, When I say leaking joints, it's my somewhat colorful way of describing the fluid buildup that leads to swelling.
By the way, as to that understandable bias, I share it (of course). It's paid many dividends over the last 7 or so years, but it has also caused me some harm. JUst in the last year I've ignored several things that turned out to be real, including a severe tear in my quadricep tendon.
edit: when a group is united around a single idea, like this one, there's always the danger of groupthink and a kind of blindness creeping in. Truthfully, the notion that acute Lyme disease is a fictional illness is absurd on it's face.
|
| pspa123 |
Posted - 09/10/2012 : 11:13:46
Balto, that is an amazing story.
As far as chronic Lyme goes, I am no expert, but my impression from reading quite a bit about it on the internet in my search for a diagnosis is that it is a black hole and very difficult to meaningfully differentiate from a host of other universal explanations of chronic states of unwellness. I came away from it all pretty skeptical. |
| tennis tom |
Posted - 09/10/2012 : 10:24:45
Hi Balto,
I agree with your handling of your "condtion". About a year ago I had a rare condition called a Ludwig's Angina that I was operated on and I've written about here. I still feel it could have been treated by the docs more conservatively than emergency surgery. I feel it was caused by some invasive periodontal work I had a few months earlier to save a tooth that caused the infection. I now have an occasional irritation in my throat in the area of the surgery causing coughing. I sometimes wonder what future problems may be lurking due to the maxillofacial surgery and if it could have been treated with antibiotics and some time like you did.
It's just hard to be on a gurney at midnight, staring up at a surgical team and argue Sarno with them. They are telling you, if you don't have their surgery, you may not live through the night, because your throat will continue swelling and stop you from breathing. But, I sometimes wonder, if I'd stopped the whole process and said: "NO, I'm not giving permission to operate!"--Like Clint Eastwood says: "Are you feeling lucky...?". |
| tennis tom |
Posted - 09/10/2012 : 10:04:26
Hi Art,
What is a "leaky joint", I've never heard of that DX? This is the TMS board--therefore--80% or probably more of Lymes, chronic fatigue, fibromyalgia are psychosomatic (TMS). The problem for the sufferer is how to take charge of their own mindbody health to determine if by some off-chance, they have a "real" structural condition and what treatment program to employ.
G'luck
==================================================
DR. SARNO'S 12 DAILY REMINDERS:
www.youtube.com/watch?v=r0dKBFwGR0g
TAKE THE HOLMES-RAHE STRESS TEST
http://en.wikipedia.org/wiki/Holmes_and_Rahe_stress_scale
Some of my favorite excerpts from _THE DIVIDED MIND_ :
http://www.tmshelp.com/forum/topic.asp?TOPIC_ID=2605
==================================================
"It is no measure of health to be well adjusted to a profoundly sick society." Jiddu Krishnamurti
"Pain is inevitable; suffering is optional." Author Unknown
"Happy People Are Happy Putters." Frank Nobilo, Golf Analyst
"Be careful about reading health books. You may die of a misprint." Mark Twain and Balto
"The hot-dog is the noblest of dogs; it feeds the hand that bites it." Dr. Laurence Johnston Peter
======================================================
"If it ends with "itis" or "algia" or "syndrome" and doctors can't figure out what causes it, then it might be TMS." Dave the Mod
=================================================
TMS PRACTITIONERS:
John Sarno, MD
400 E 34th St, New York, NY 10016
(212) 263-6035
Here's the TMS practitioners list from the TMS Help Forum:
http://www.tmshelp.com/links.htm
Here's a list of TMS practitioners from the TMS Wiki:
http://tmswiki.org/ppd/Find_a_TMS_Doctor_or_Therapist
Here's a map of TMS practitioners from the old Tarpit Yoga site, (click on the map by state for listings).:
http://www.tarpityoga.com/2007_08_01_archive.html |
| balto |
Posted - 09/10/2012 : 07:58:22
quote:
Originally posted by art
Have been recently diagnosed with Lyme and there's no doubt in my mind I have it. I'd spent the better part of the summer limping around with more swollen, leaky joints than I can count. Also a series of weird rashes. These are all off the charts unique symptoms for me, and the Lyme diagnosis (which was a major surprise) fits perfectly.
Lyme is real as real can be.,The controversy involves chronic Lyme and I won't get into that.
Hi Art, 8 years ago I was diagnosed with Lyme disease. I saw the tick with my own eyes, I had the bulleyes rash that is as big as a dinner plate. I had all the typical lyme disease symptoms: fatigue, joints pain at my knees and ankles, half of my face feel numb and hard to move, headache, weakness in many parts of my body, insomnia, swelling... My doctor said my case is severe and he will put me on a 2,3 weeks of intravenous antibiotic. At that time my wife was unemployed and I'm waiting to close on a sale transaction so we can have money to pay the bills, I can't afford to take off, so I asked him if I can delay it for 2, 3 weeks, and would it get worse. he told me it is already worst. 
In those 2,3 weeks delay, I did meditation for hours at night before bed to try to get a good night sleep. Then I noticed at the second weeks many of the symptoms got better. Sometimes they even disappear for minutes to an hour. So I thought to myself: if it is really bacterias it wouldn't get better. Bacteria don't take time off, they don't know that I'm meditating.
By the third weeks, all my symptoms just disappeared using what I know about tms thinking.
I did take the one week oral antibiotic to make my doctor happy then end up with an upset stomach. He said I'm one lucky guy and he has no idea what make the disease went away.
------------------------
No, I don't know everything. I'm just here to share my experience. |
| sue1012 |
Posted - 09/10/2012 : 07:14:16
All I can say is if you feel great, stay FAR away from the Lyme forums etc. the chronic lyme community really is like an alternate universe that creates a lot of fear. I have been a part of it for 3 years since diagnosed by blood tests and it's been the worst 3 years of my life. My brain definitly ran with it. I don't know if it is real or not, but i would forget all about chronic Lyme if you feel well. It will save you a lot of grief.
All the best to you, Effie. |
| art |
Posted - 09/10/2012 : 05:50:10
Have been recently diagnosed with Lyme and there's no doubt in my mind I have it. I'd spent the better part of the summer limping around with more swollen, leaky joints than I can count. Also a series of weird rashes. These are all off the charts unique symptoms for me, and the Lyme diagnosis (which was a major surprise) fits perfectly.
Lyme is real as real can be.,The controversy involves chronic Lyme and I won't get into that. |
| Wavy Soul |
Posted - 09/09/2012 : 16:57:10
this really IS a potential minefield - MINDfield isn't it?
I have also flirted with all this in my attempts to find solutions to pain and fatigue that have lasted for decades. I have a very nice MDwho has totally bought the Lymes story, and once you get into that world, it's like an alternate reality in which all evidence shows you how true it is (like conspiracy theories).
What I have to remember is that the physical body doesn't have any independent existence - it's just a pattern of energy. It expresses a pattern of energy called my mind (conscious and subconscious). I definitely DON'T want it to express some kind of chronic paranoid organism. So there!
Just say no to the Lymes cult!
Love is the answer, whatever the question |
| Effie |
Posted - 09/09/2012 : 13:28:05
Thanks, Bugbear! I live 19 miles from Lyme, Connecticut.  I pulled myself together this morning and went HIKING in the WOODS again . . . it's something I love to do and it helped to get out and moving in the fresh air! I really like your advice to make an excuse and leave, or just change the subject and I plan to keep myself aware and focused on just that kind of response!
I did some more searching here at TMS help forum and found a really good post regarding this subject that was very helpful, too! |
| Bugbear |
Posted - 09/09/2012 : 09:47:42
quote:
Originally posted by Effie
aside from a few tiny aches and pains, I'm feeling GREAT!
My problem is, I keep reading about chronic Lyme Disease on the internet, and I have a co-worker who was recently diagnosed with chronic Lyme (not by a regular md but by a doctor whom she has had to pay out of pocket). At first I was starting to panic, and I've been getting all kinds of advice from the chronic Lyme support groups I've checked out that my treatment is all wrong and I have to seek help elsewhere (i.e. not treatment by a regular md), or I may end up in pain the rest of my life. But alternatively, the CDC and a lot of other sites, are calling chronic Lyme a myth, an example of mass hysteria, and just a scapegoat for people who have chronic pain.
As far as I am aware I have never had Lyme disease. I do come from an area not too far away from Lyme, Connecticut so I am very familiar with the disease, remember all of the furor when it was first discovered and know people who have had it. No one I know has ever had anything like you are describing. I would go with what you say in your first paragraph. You feel GREAT. Stay with that and avoid these so called support groups. They sound like one giant nocebo. If you follow their advice, you are sure to find some doctor who will tell you what you fear, especially if you are paying him out of pocket. Try not to panic. Panic will lead to an increase in symptoms and is likely to put you further into debt.
Anyone who asks you how you are, tell them you feel GREAT. If they start to tell you horror stories, invent an excuse and leave by the nearest exit. My daughter was recently diagnosed with glandular fever. If I wanted I could dig up all kinds of scary stuff on the Internet. I happened to mention my daughter to a friend the other day. My daughter had a rubbish immune system even before this diagnosis, I told her.. My friend asked if she might be suffering from Lupus! I changed the subject.
Go and do something you enjoy, Effie. |
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