I just finished reading a post by this Dr. Jernigan, under the Townsend Letter topic.
You know, I just need to vent that after wasting thousands and thousands of dollars on wacko treatments and quack "doctors" promising the moon, I AM TOTALLY ****ED AND FED UP!! i am so tired of feeling like a desparate begger, suspending all logic to give myself hope that finally! one easy thing, one single doctor can cure me. I am SO ANGRY that we are taken advantage of because of our illness and our desparate desires to be well again.
We are SO SCREWED AT EVERY TURN - screwed by the big establishments that should be protecting us - although I do have to say a BIG "HAT'S OFF" to the FDA for reimbursing me for yet another bogus health product I bought online!
Then we're screwed by all these crazy QUACKS who sprout up with their promises of quick cures with weeds, stones, crystals,"energy" medicine, machines made in basements that'll kill you before they cure you, red, white and blue saunas, grass bags taped to the feet at night, colonics, ENOUGH BAGS OF SALT AND VIT. C TO KILL THE heartiest of patients, copious amounts of Benicar - a frickin blood pressure medicine for all of us with Lyme induced low blood pressure, lies, nonsense, and a whole carnival of other treatments out there that require either a lobotomy or a terrible disease like ours to use.
AHHHHH!!! This whole experience is MADDENING? Any one else out there need to vent?
WE NEED SCIENCE. WE NEED RESEARCH
Posted by Tincup (Member # 5829) on :
OUCH on the bad guys, A.
I'm glad I'm not THEM tonight.. especially if you have any voodoo dolls laying around.
And by the way, you shouldn't beat around the bush so much. I really wish you'd just say what you are thinking.
Posted by luvs2ride (Member # 8090) on :
Then SOB please
Posted by Geneal (Member # 10375) on :
I agree. I have more bottles of xanax and paxil in my cabinet for my "post traumatic stress disorder".
I have sent a personal letter, along with Dr. B's guidelines to each "duck" who refused to test me for Lyme as we don't have that in our area.
It made me feel better.....maybe, just maybe these ducks (incuding the one in the ER) will glean something from the info provided.
Hang in there. Thank God for our LLMD's.
Can you imagine where we would be without them?
Hugs,
Geneal
Posted by CaliforniaLyme (Member # 7136) on :
I still thank my Higher Power every day for my LLMD and for longterm IV Rocephin*!)*!!!!!!!!!!
Without which I wouldn't be able to thank anyone!!!
Posted by CaliforniaLyme (Member # 7136) on :
p.s. And the quackery that is proliferating around here in the Bay AREA is The SCIO Machine. HOLY HOLY!!!!
And WORSE, these peopple charge for REMOTE SCIO SESSIONS!! There are local people who pay JUST $150 bucks a pop to have the machine "turned o n with their coordinates" so it can send energy their way!!!!!!!!!!!!!
AGH!!!!!!!!!!!!!!!!!!!!!
It is basically aimed at science stupid folks.
There is NOTHING to back it up. I began reading physics when I was about 7. I love physics and quantum theory, etc. I think this got started because of that amazingly popular but REALLY SCIENTIFICALLY UNSOUND AND PLAIN OLD STUPID movie that came out 3 or so years back. The one with the "charged" water. Etc. That set back the popular conception of TRUE quantum science by about 500 years!!!!!!!!!!!!!!!!!!!!!!!!!! HOLY HOLY!!!!
Science stupid people- boy- can they BUY anything.
And to people, yes, I'm going to get ugly here, people who may just feel unwell but who aren't on a straight path to HECK, maybe it may help some people FEEL better because it is a psychological panacea!!! HOWEVER it is quackery & garage and to those of us who desperately NEED abx to STAY ALIVE, who need LLMDS to STAY ALIVE, it is just another thing that gives Lyme patients a BAD name.
AND WORST OF ALL< some of those people who THINK they have time to PLAY around, time to TRY things that sound "cosmic", may NOT have that time and may end up REALLY sick.
I don't know any ALSers or MSers who play around with SCIO.
I think the people who market this stuff are evil-
THEY AIM IT at US!!!!!!!!!!!!!!!! They TELL their practitioners who their market will be!!!!!!! They aim for the heat and the hopes- adn the almighty pocketbook-
It makes me mad because I believe it contributes to the ultimate suffering of Lymies in general.
And also because I AM GOOD at science- and know that it is garbage-
CUTE cleverly marketed & sold garbage!! Garbage with a pink bow in a shiny box!!!!!!!!!!!!!!!!!!!!!
Agh!!!!!!!!!!!!!!!!!!!!
And of course it "helps" someone. Compliments help me!!! And feeling better helps you take other steps toward health- But act against borrelia>? No.
Posted by CaliforniaLyme (Member # 7136) on :
p.p.s.
I am NOT anti-alternative- I think Artemisia is WONDERFUL- I htink acupuncture is wonderful- HBO can be very helpful for a subset of patients- I think herbs are very powerful and people should be very careful but that they may hold a lot of hope! even cures (I hope- would be nice if someone finds the perfect combo!)(I am letting you guys be the guinea pigs for me, I only do what I see work because I don't have time)
Colloidal silver I am actually pretty neutral on- I remember Maddog had it help him if I remember right and I know he is no fake online Lymie- (see, I am so suspicious!!! *sigh*!!)
But what I see as dangerous quackery-
Scio, Rife, Vitamin C & Salt protocol & Marshall- HEAT therapy to the extreme (one lymie died in a heat box heated self up until she had heart attack!!! bad idea!!!)(heat therapy in MODERATION I think is wonderful!!!!!)(hot tubs are great Lymie write-offs on taxes!!!!!!!!!!!!!!!!)
Posted by Geneal (Member # 10375) on :
Dear California Lyme,
They aim these scio devices and scams at us because we're easy targets.
We want desperately to get our health and life back.
I believe desperation drives a lot of consumers to believe that something will work for them.
Some people just don't educate themselves on their illness, and of course there are the patients who believe everything their duck says.
I would rather someone send "waves" to me than think I am going to be on antibiotics for a long time.
I am all for a "magic" cure, but realistic to know it doesn't exist at this time for what we have.
I think it is easy to target a population desperate to find help to diagnose them and make them well.
Should be criminal.
Hugs,
Geneal
Posted by Sue (Member # 5671) on :
Ca Lyme - sent you a PM.
Posted by CaliforniaLyme (Member # 7136) on :
Geneal, we are on very different wavelengths because I am so thankful if I am lucky enough to stay on antibiotics for a long time and not progress and die which is where I was headed before them!!!! I take care of my body and have no side effects from antibiotics at all. For me they allow me to live a normal life agian which I never ever thought I would ever have again!!!!
I get to see my kids grow up- for now!!!
I get to be alive today- for now!!!
I am constantly aware of 2 things-
1. the IDSA (*&@^@$! who could take away my access to healthcare
2. the possibility of a TBE type virus coinfection which could ractivate at any time and rev up my ALS-like symptoms and kill me
SO I am gosh darned grateful for very antibiotic laden day!!!!!!!!!!!!!!!!!!!!!!!!!
I get to have a wonderful life thanks to my LLMD and longterm IV Rocephin-
Posted by Geneal (Member # 10375) on :
Dear California,
I am very greatful for my antibiotics and intend on taking them as long as I need to or have to.
I was only trying to point out that people who suffer daily are willing to try many things.
I am lucky as I have somewhat of a backround with hospitals, acute care, rehab and such that I knew something
was physically and not mentally wrong with me.(Not that I can't be mental at times).
I was actually agreeing with you.....just pointing out that the lack of support from physicians, to insurance companies, etc. may
contribute to people trying everything and anything to get well.
I may not try something that works for someone else, however I would never argue against what makes someone feel better.....
I was just supposing why as a population we are being targeted.
I dare someone to take my meds away.
Go ahead, make my day!!!
Hugs,
Geneal
Posted by IsThereHope (Member # 6581) on :
Forget all this nonsense from these quacks, focus on your immune system, if you can, avoid anti-biotics, in the end, they just don't work.
Continually do colon cleansing, immunue system building, get your "gut" straight with pro-botics and digestive enzymes, rebalance your ph with ACV (Apple Cider Vinegar). Swap in power natural anti-biotics like allimax and silver (I wont mention a brand here) and colloidal copper. Do raintree brand (because they work) cat's claw and graviola, drink cinnamon tea and cloves and do all things "anti-fungal" and you will improve.
The funny thing is if you treat lyme like a system fungal infection (without the chemical garbage the docs want to give you) you will improve.
Posted by Nebula2005 (Member # 8244) on :
"Where would we be without our LLMDs?"
I'll tell you where: where I am, in the middle of nowhere with nothing but substandard doctors, tired of the whole chase, with no answers or solutions. Tired, sick, angry.
Those of you with easy access to a good doctor, COUNT YOUR BLESSINGS EVERYDAY THAT YOU DON'T HAVE TO CONSIDER QUACKERY, OUT OF DESPERATION.
Posted by MariaA (Member # 9128) on :
I'm a deep believer in medical herbalism (and have studied it a bit and will probably try to go through a lengthy program in the future with a reputable school).
I also understand that there are serious problems with antibiotics as they're abused in this country in ways that are causing antibiotic resistance among virulent bacteria.
I also understand that there are many people who can't handle antibiotics in the doses required for Lyme or other chronic infections such as tuberculosis (similar timeframe on longerm antibiotics, by the way!).
However, I think that article in Townsend Letter is shameful. Even naturopath Dietrich Klinghardt, developer of some very successful non-antibiotic therapies for Lyme, and Stephen Buhner of Healing Lyme (a book on a very successful non-antibiotic Lyme treatment with very powerful herbs) don't talk down other people's therapy methods like the Dr. J in the article does. It's obvious that for huge numbers of Lyme patients treated properly, antibiotics have helped immensely, and it's NOT THAT HARD to research this success rate properly.
Posted by IsThereHope (Member # 6581) on :
Cave, why make such a reply, I made no claim, besides, nothing works for everybody does it?
Posted by Anneke (Member # 7939) on :
Wow... I'm so glad to read everyone's responses to my post! It makes me feel less alone in this frustration!
I had to laugh about the SCO machine thing... How convenient is that??? For only $150, you can stay in the comfort of your own home and get moon beams coming your way -as long as the coordinates are adjusted!
I've just about done it all when it comes to trying out there stuff. Last year, in a desperate moment, I paid $150 for a "medical intuitive" down in LA to consult with me for 15 min. over the phone. WHAT A CROCK OF CRAP THAT WAS!!! And not only a crock of crap in my opinion, but it was HARMFUL and damaging to me. I'm ashamed that I tried it, but living with this chronic illness has driven me at times to seek comfort and guidance where it can't be found, and to suspend my judgement.
As some of you have expressed so beautifully: THANK GOD FOR the FANTASTIC LLMD's in our state! AND I TOO AM GRATEFUL EVERY SINGLE DAY FOR ANTIBIOTICS THAT HAVE GOTTEN ME OUT OF BED AND IN FRONT OF LOVED ONES.
Posted by MariaA (Member # 9128) on :
ack, that is so frustrating to hear... that people are being taken advantage of due to being dropped on our heads by the conventional medical community.
All of this would have been prevented by proper diagnosis and treatment in the first place for many of us. But the IDSA guidelines ensure that even that's not happening for many people...
Posted by Anneke (Member # 7939) on :
A few more thoughts...
Cave, I really agree with you about this being affliliated with ILADS AND LDA and the implications of that.
Since i'm still in venting mode... The real, real source of my anger is ultimately at the powers that be - the CDC, the IDSA etc.. for not doing more good research. Think about the whole AIDS parallel here. The medical world was able, with all the money and energy poured into the cause, to come up with treatments that keep people alive, that work! i can only imagine the joy that the community felt when they watched loved ones literally come back to life with the newly discovered treatments!
if we had a real medical cure for those of us with chronic Lyme and coinfections that respond well to antibiotics, but do not lead to a cure - then no one would be doing all this wacky unproven alternative stuff!
i'm so excited that the Columbia Research Center has almost reached it's goal, and will be starting soon. How exciting for all of us!! and may their efforts be powerful and effective!
Posted by HEATHERKISS (Member # 6789) on :
Oh that's just awful.
I wish my LLMD was a nuero, endo and gyno along with internal medicine.
It is just to if e to go to other doctors when you have Lyme.
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