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stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 5/14/2009 11:44 AM (GMT -6)   
I am starting to believe that no one knows anything about this disease. This is not an insult. I just feel really sad. Everyone is scrambeling around on this site, looking for answers. Does anyone really get WELL? Do you know anyone who is cured or well? Do I have POST LYME SYNDROME??? I had this so long am I permanently damaged? I think my body is toasted! I really dont know. Are long term antibiotics going to help? No one knows. Part of me thinks maybe I need to deal with the symptoms and stop trying to cure them. This may be our reality. what do you think????????

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 5/14/2009 12:41 PM (GMT -6)   
At times I feel the same way and think the same thing. I hope we are wrong and think we need to try and remember that most people who get well no longer frequent the forum. They are hopefully living their lives. To those who are feeling better and still post to reassure and encourage us - THANK YOU!!

yaniv_naced
Regular Member


Date Joined Sep 2007
Total Posts : 134
   Posted 5/14/2009 1:07 PM (GMT -6)   
We all cling to the notion (and hope) that the folks who got well have moved on and no longer post.
I really hope that is true and that people do get better. I have run into a few people who say they had lyme, treated for a few months and got better and stayed that way.

But they all seemed to get better within 6 months of starting abx. The thing that worries me is that most of us that hang around these boards have been unsuccesfully treating for much longer than that.

After somebody is this sick for this long, and staying sick despite bombarding with every antibiotic known to man, is it realistic to expect that some miracle will happen and we can get better? To me, the cold hard reality is setting in that maybe the answer is "no". There's a vast population out there pretty much resigned to their fate and silently waiting out the remainder of their years.

Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 5/14/2009 1:22 PM (GMT -6)   
Well, there's another perspective on this too.
 
I suspect I've had Lyme for a very long time.  I really struggled for the last 3 1/2 yrs.  I deteriorated over the last year and finally ended up non-functional and unable to work.  Five months into treatment, I am slowly improving.  But ... if we didn't treat this - isn't there the possiblity that we could actually get worse?.  Maybe some other infection or stress would let the Lyme be more active and we might end up worse that we were. 
 
None of us really know what the final improvement will be.  But treating Lyme so it doesn't get worse seems like a valid reason to continue treatment.
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


gotlyme
Regular Member


Date Joined May 2009
Total Posts : 21
   Posted 5/14/2009 2:17 PM (GMT -6)   
I have asked myself all those questions numerous times. But for the first time in years I do have hopes that the lyme community will get more attention and I cross my fingers that some regulations will change and more studies will be done. I have to believe it, I just hope that everyone can hang in there until then. I personally hope that stem cell research can lead to full recovery.

But honestly, I would settle for drs saying they know I am sick but just can't fix me than to continue acting like I am crazy because they refuse to believe I am sick.

Lala429
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 5/14/2009 2:50 PM (GMT -6)   
I got sick in 2002 with Lyme and Ehrlichia, went on heavy abx for 2 years (orals) and felt fantastic - So from 2004-2008 I was fine. I was exercising 5 days a week, lost 40 pounds, felt wonderful. Got rebitten October 2008 - started getting symptoms in January (in spite of doc putting back on orals) - and this time they did CD 57, which in January was a 19, in April a 16. Went on IV Rocephin in Feb but when LLMD saw CD 57 getting lower, she put me on oral doxy along with the Rocephin 3 weeks ago (400 mg daily) - I pray I get better but I feel as you do now - this is different and I don't know why I feel that way. There are no definitive answers. All the good docs can do is try and all we can do is try along with them. It's all a battle. Here I sit awaiting the answer if I got approved from my insurance for another month of IV treatment. I just pray every day for a miracle - that someone knows something and eventually it will be found out and shared with us.

Peace & Hugs,

Laura

yaniv_naced
Regular Member


Date Joined Sep 2007
Total Posts : 134
   Posted 5/14/2009 3:12 PM (GMT -6)   
Laura:
Were you rebitten for sure in October 2008 or was it a relapse?

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 5/14/2009 5:00 PM (GMT -6)   
There's more to it than just killing spirochetes. There're coinfections to deal with, rebuilding the damage done to the body, rebuilding the immune system, rebuilding a new sense of wellness, etc.

It has been my observation that, of those with long-standing Lyme infections, it is those who persue multiple avenues of treatment who seem to do better than those who only focus on abx alone.

Just my observations...
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.


stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 5/14/2009 5:05 PM (GMT -6)   
thank you razzle

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 5/14/2009 7:23 PM (GMT -6)   
I feel very comfortable with what Razzle said and can only agree....and encourage you to try what Razzle called the multiple avenues of treatment.

I had some big success with fighting the symptoms with homeopathy and detoxing; it kind of gave my body and soul some space to reorganize; I postponed the question of cure b/c all the med establishment around here is fighting about it. I personally think that we often might not have a very realistic picture of us doing the "curing" - this seems to be such a highly multidimentional biochemical process and we still know so little about our body functions. But nevertheless I see some chances to kind of facilitate, assist maybe even mediate at some point in what we call a healing progress. So abx is only one route or one time- sequence in what we can do. Just my thoughts....

Hang in there!! greetings to you, dorit

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 5/14/2009 8:00 PM (GMT -6)   
Lyme disease, still sucking wind after all these years.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 5/14/2009 8:14 PM (GMT -6)   
Well, we all have to face the fact that some people will succeed at fighting off this nasty bug. But some will never get better. And some will die. Even if everyone is treated in the same way.

This is nothing new for diseases, think of cancer, for example. Even MS, from which some people experience remission for many years, and many do not. Or how about AIDS?

All human bodies are different and so they respond differently. I agree w/ Razzle --- and I think the reason I agree is that multiple avenues of treatment gives us hope that at least one or 2 can make a difference.

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 5/15/2009 5:08 PM (GMT -6)   
There are multiple avenues of treatment for a sinus infection...So, it stands to reason that there may be multiple avenues of treatment for Lyme. That said, some of those treatments are not based on research, so the premise of this post is about the only thing we know:

No one knows anything.

LLMD's -- the few that exist -- pedal hope and a willingness to use the prescription pad to dole out massive doses of ABX, based on Web sites like this or what the patient is willing to try.

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 5/15/2009 5:17 PM (GMT -6)   
Um, not all LLMD's are abx vending machines. I've seen 2 LLMD's and both of them prescribe other things in addition to the abx. And I've seen 3 LLND's (Naturopathic physicians - usually they try to avoid prescription medications) and all 3 of them thought abx needed to be at least part of my treatment program.
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 5/15/2009 5:40 PM (GMT -6)   
great razzle.

guess no one ever gets off the merry go round once they've boarded it.

that's good for the llmd business as they have no shortage of patients like us!

sigh.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 5/15/2009 6:52 PM (GMT -6)   
Hoping, it is the same for many many illnesses, including cancer. Why don't we have a cure yet?? How about AIDS? There's a heck of a lot of people on all kinds of merry go rounds. Drs flat out don't know. They can't even cure the common cold!

Research on Lyme and the antibiotics and the treatments are SO relatively NEW. I don't have the experience you have at this point, but at this point, I am inclined to believe the LLMDs are prescribing and dosing the abx because this is what they have experienced improvement with. (scuse me, strugglin w/ a little brain fog here....)

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 5/16/2009 7:50 AM (GMT -6)   
yeah, you're right! but my experience with the llmd's don't seem to have any real answers either.

now if you come in with something they can treat and cure -- that's another story.

it's all guess work at this point, and there's not a lot of research being done. If I'm wrong, sign me up as a participant in a clinical trial. I've got nothing to lose. But first they have to diagnose me and no one can definitely do that either! HELP!

the difference between lyme and cancer or aids is that they get all the research that's being done in the world. Aids patients had better mobilized advocacy groups in the beginning. Heck, Tom Hanks won the academy award for playing an aids patient.

With Lyme, and I really think you will agree on this point, there is no respect. Heck, we can't even mention it to a neuro for fear of being given the big boot to the curb. So, what's a sick person to do? Visit the closest LLMD and pay through the nose for a treatment that may or may not do any good and will in many cases cause stomach upset that could be problematic. At least with cancer, they can try to shrink a tumor or something and know that the side effects are bad. There's respect with the research to back it up.

We need more research, a definite test, and more doctors. Yes, more doctors besides the few LLMDs out there.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 5/16/2009 8:21 AM (GMT -6)   
Well, I guess we all need to be writing our congress people begging for more research and attention (lotta good that will do..... ) We've gotta make this known! We've gotta get our Drs to ALL report ALL our cases to the CDC.

One possible thing that may help is pushing our insurance companies. Some folks on here can probably sue them. More people need to do that. I believe they can win if they have MDs behind them.

I'm just starting out. I'm going to question Quest's protocol and cc my insurance. My PCP has given me a referral to a LLMD who does not take insurance. I will see him in 2 weeks. He will provide me w/ the paperwork to file w/ insurance, he believes I will be reimbursed when I file. That is one step. His nurse said that he will do labwork and prescribe treatment that will be covered by my insurance, so that will be another step. Whatever his treatment is, I can research. And if I believe it is dangerous or questionable, I will write and write and write. And I will ask my insurance for answers, and I will tell them that they HAVE to find answers.

This is every bit as big as cancer and AIDS. The epidemic is growing, a lot of people becoming disabled (eventually the gov't will realize THAT), and people are dying. Children are crippled and physically disabled. The more we scream, the more attention this travesty will receive attention.

Before I got ill, I was a breed specific legislation fighter (dogs). Did a lot of research. Lead 3 protest marches, spoke before hearings, and wrote about a thousand letters. I speak it wherever whenever I can. If those who are fighting can keep up w/ the fear mongers and bigots, one day we will catch up because our mouths are so big and because we are right.

With what we pay out in insurance, no one should have to be paying out of pocket w/ no coverage. This is criminal. Unfortunately, the only thing that might help is that money talks. If insurance cos are saddled w/ all this coverage, they will push for better tests, research and treatment. That may be the ONLY thing to kick them, other Drs and researchers in the rear. And finally, hopefully fresh new researchers will see the $$ signs and jump in there (if we don't go universal in the meantime).

Hoping, I've probably read your story, along w/ many others, so I don't remember your details. If you will point me to the original thread, I would like to read it.

btw, the LLMD I have found used to work w/ the huge Family Practice office of my PCP. My PCP says that some family members became ill w/ lyme. So he left FP and went to work w/ Dr R, (KC area) about whom there are posts on here. She is reknowned, at least around here. On those posts, people complained about the expenses -- folks are shelling out thousands of $$ per WEEK. With her office, he was working too many hours and charging too much money, so he left to devote the rest of his life to Lyme. I am told by his nurse and my PCP that he is passionate about Lyme, because it is personal.

I don't know the whole story, because he only sees patients once per week. I think he does research and is semi-retired. My first consultation for one hour will cost $160. After that, visits are $80. I can't do that, but if insurance will pay all but my co-pay, then I can try. Maybe I'll end up w/ a good referral to share, we will see.

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 5/16/2009 12:08 PM (GMT -6)   
LymeUnknown,

It is my understanding that if you test pos for lymes by law they have to report it to the health dept. in your arera. this was what i was told yesterday by my local health dept.. so if this is true and all our cases are turned in and we still havent gotten the help we need. then we need to find the right doors to break down.CDC and health dept. doesnt seem to be the right ones.

i know this old dog is more then will to bark at anyone lol. just point me in the right direction.
btw i am going to look into have a t-shirt made (hot pink lyme green lettering) stating I HAVE LYMES!!! ASK MY about IT.
and i will be wareing it everytime i go into the pulbic. i do not care that the doctors here dont think lymes is here. as i told em i have lived here in there bubble all my life.

as the saying goes fore warned is fore armed. i'm more then willing to give others there armer so to speak. if i can help to keep just 1 other person from this hell i call lymes then my battle was worth the fight and the daily pain.

on a lighter note when i win the loto ya'll will be getting tickets to go to DC and everyone will have t-shirts and the pres well know we wont give up :) make them understand we need help in this battle.


wishing everyone well soon,
   RD
                                                                                                                 
 
still looking for answers
 


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 5/16/2009 7:01 PM (GMT -6)   
Dear RD,

You're so very brave.

Question: We're people with aids denied health insurance claims back in the early days?

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 5/16/2009 10:29 PM (GMT -6)   
how is it that i'm brave.

no i'm scared. i have something that can take away my life, and not 1 flipping doctor here is willing to treat me. no my only recall is to fight. so in my willness to fight i will not just fight for myself but for all who are misstreated. i know i do not stand alone.

i'm not sure that folks with AIDS was denid treatment, but i do know that the health groups  knew it was in the bllod for many yrs b4 they screened for it. my 6wk old son had surgery in 80 b4 screen and he was given blood. at first they said we had to watch him for 6 yrs to know, then at 6yrs it was up to 10 yrs. well he is almost 29 now and fine. i do remeber the AIDS pasions being placed in sepert wigs or rooms a long time ago as my mother was a ICU nurse back then.

btw. i did go out and buy t-shirts paint and stinces in hotpink and lymes green.
just look for me ;) hehe


   RD
                                                                                                                 
 
still looking for answers
 

Post Edited (RottenDog) : 5/16/2009 10:55:45 PM (GMT-6)


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 5/17/2009 6:45 AM (GMT -6)   
hopingToFindCure said...
Dear RD,

You're so very brave.

Question: We're people with aids denied health insurance claims back in the early days?
I don't think their medical claims were denied as much as these people were dying and it seemed to be a specific group (gay men).  I do know from my own experience in insurance that insurance policies for single men were denied a lot and/or they were required to take a full medical exam before the policy would be issued.
With LD, even though people do die of LD, it is not the "norm".  Our problem is being long-term chronically ill, too sick to protest and fight.... too sick to do laundry or a sink of dishes... in too much pain to drive or walk or DECIPHER MEDICAL CLAIM REJECTION NOTICES.

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 5/17/2009 1:00 PM (GMT -6)   
That is all true. Maybe a better comparison then would be the FM was dismissed as all in the head of the many women who suffer from it. Although Lyme seems to be more damaging in that is a multi-system disease. All the more reason for us to not give up our fight.

Here's something encouraging I heard on mystery diagnosis just last night.

A man was plagued from the time he was a boy with joint pain. After graduating college, he added irritable bowel and frequent vomiting to his list of complaints. Doctor after doctor prescribed the usual without a diagnosis, none of which did any good.

So, he did what some of us would most likely do, he gave up and went on with his life as best he could.

Fast forward 10 years. He is now married with two kids. He decides it's time for a life insurance policy. After medical tests reveal high protein levels in his blood, he was denied and returns to yet another a doctor -- this time at the famous Columbia U...blah blah blah. One doctor there managed to put the pieces of the puzzle together and diagnoses the poor guy -- who went his whole life with this bizarre disease -- with something that affects one in 300,000. Text book case. The best thing about the timing of his diagnosis is that three years prior some researchers -- yes researchers!!! -- had uncovered a treatment that allowed him to at last live a normal life.

His message at the end of the show was inspiring...DON'T GIVE UP IN YOUR SEARCH FOR DIAGNOSIS AND CURE!

He wished he had a long time ago continued to go to doctors even though they often suggested, when they didn't know what was wrong, that it was also in his head!

So there you have it.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 5/17/2009 1:13 PM (GMT -6)   
Hoping, so what was the disease??

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 5/17/2009 5:47 PM (GMT -6)   
LymeUnknown said...
Hoping, so what was the disease??
Nothing, it was all in his head! - rolleyes devil blush turn smilewinkgrin turn blush devil rolleyes

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs

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