couldn't walk from my back porch to the corner without great effort, lost 30 pounds because I was in such severe pain I couldn't eat..

anyway, my 11 year relationship ended in part because my partner had a breakdown over the death of her mother a year ago as well as my being sick with Lyme....her mom died of pancreatic cancer..she was diagnosed and died 6 weeks later..

I guess what hurt me the most was hearing it said that I cried too much (during herxing) as opposed to someone who had cancer and really didn't do as much..

anyway, I am not trying to compare any diseases in terms of who has it worse than others..because really I would not want a cancer diagnosis..

but, now that I feel like I am getting my life back with bicillin injections..well, was I am beginning to wonder if I really was just a big wimp and I wasn't tough enough..

Could anybody please give me their input..positive or negative..I can take it (now)

thanks

I can attest to that fact, as I've had several surgeries! The pain of Lyme at least equaled that.......and the pain from surgery was "limited."

It was over in at least a week's time!

Pain from Lyme and babs goes on and on and on! At times, it's excruciating! I've been in pain for more than 25 yrs!

My urologist even told me that the pain I had from Interstitial Cystitis was worse than the pain from bladder cancer....and he should know!

Cut yourself a little slack here! Three years of crying is a bit much, but hey! Lyme causes severe depression too!

So go easy on yourself.....move on and start looking forward to getting your life back! We're here for ya!

------------------
oops!
Lymetutu

 

Don't worry you are not a wimp. I was in pretty bad shape myself. I compared it to being burned alive. I had had my son 2 years before and had 4 days of labour with no pain drugs. I thought that was the worst pain i had ever experinced, well it was a walk in the park, compared to what I went through went I went down hard with lyme.

I even had a c-section where they used a mallet to hit my abdomen that left actual bad bruising and not was nothing in comparsion either.

Nerve pain is the worst pain known to man.
Many go crazy from having one nerve burn, I had all my nerves from the waist down burn as well as whatever else we have there. Plus a few other areas, but that was the worst.

Lyme pain is very serious pain. Someone just told me the other day they are on methadone for it, and another told me they were on oxycotin and this are the first cases I have heard of either.

Many of the big gun pain drugs are pulled out very bad lyme pain. Many used in cancer, and I would imagine it is right up there with cancer pain.

So don't feel bad, we got thought without giving up and this is a big deal.

Take Care
Lymiecanuck
 

The first comments were made in relation to the abstract that come right after it. After the abstract there is the experiences of Lyme patients who were physicians.

Hope this helps.

Angie

http://lymeproject.com/AALeft/AACases/Sickerthanheartattack.htm

Sicker than diabetic and heart attack patients.

In the recently completed NIH clinical trials, individuals with chronic Lyme disease were as sick as individuals with congestive heart failure and sicker than diabetic and heart attack individuals.[1]

References
1. Klempner MS, Hu LT, Evans J, Schmid CH, Johnson GM, Trevino RP, Norton D, Levy L, Wall D, McCall J, Kosinski M, Weinstein A. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med. 2001 Jul 12;345(2):85-92.

1: N Engl J Med 2001 Jul 12;345(2):85-92

Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease.

Klempner MS, Hu LT, Evans J, Schmid CH, Johnson GM, Trevino RP, Norton D, Levy L, Wall D, McCall J, Kosinski M, Weinstein A.

New England Medical Center and Tufts University School of Medicine, Boston, MA, USA. [email protected]

BACKGROUND: It is controversial whether prolonged antibiotic treatment is effective for patients in whom symptoms persist after the recommended antibiotic treatment for acute Lyme disease. METHODS: We conducted two randomized trials: one in 78 patients who were seropositive for IgG antibodies to Borrelia burgdorferi at the time of enrollment and the other in 51 patients who were seronegative. The patients received either intravenous ceftriaxone, 2 g daily for 30 days, followed by oral doxycycline, 200 mg daily for 60 days, or matching intravenous and oral placebos. Each patient had well-documented, previously treated Lyme disease but had persistent musculoskeletal pain, neurocognitive symptoms, or dysesthesia, often associated with fatigue. The primary outcome measures were improvement on the physical- and mental-health-component summary scales of the Medical Outcomes Study 36-item Short-Form General Health Survey (SF-36)--a scale measuring the health-related quality of life--on day 180 of the study. RESULTS: After a planned interim analysis, the data and safety monitoring board recommended that the studies be discontinued because data from the first 107 patients indicated that it was highly unlikely that a significant difference in treatment efficacy between the groups would be observed with the planned full enrollment of 260 patients. Base-line assessments documented severe impairment in the patients' health-related quality of life. In intention-to-treat analyses, there were no significant differences in the outcomes with prolonged antibiotic treatment as compared with placebo. Among the seropositive patients who were treated with antibiotics, there was improvement in the score on the physical-component summary scale of the SF-36, the mental-component summary scale, or both in 37 percent, no change in 29 percent, and worsening in 34 percent; among seropositive patients receiving placebo, there was improvement in 40 percent, no change in 26 percent, and worsening in 34 percent (P=0.96 for the comparison between treatment groups). The results were similar for the seronegative patients. CONCLUSIONS: There is considerable impairment of health-related quality of life among patients with persistent symptoms despite previous antibiotic treatment for acute Lyme disease. However, in these two trials, treatment with intravenous and oral antibiotics for 90 days did not improve symptoms more than placebo.

Publication Types:
* Clinical Trial
* Multicenter Study
* Randomized Controlled Trial

PMID: 11450676 [PubMed - indexed for MEDLINE]

****************************
http://www.ilads.org/outcomes.htm
Presentations by ILADS Members
Return to Presentations
13th International Scientific Conference on Lyme Disease & Other Tick-Borne Disorders
Emphasis: Pediatrics & New Research
March 24-26, 2000 Hartford Marriott Farmington, CT, USA
Outcomes in Cases of Chronic Disseminated Lyme Disease for Three Infected Physicians, Described in Their Own Essays, Published in Peer Reviewed Journals
Virginia T. Sherr, MD
In 1972, a Swedish pediatric neurologist, 46 year old Dr. Ingrid Gamstorp, noticed generalized fatigue and paresthesias predominately in her left hand. Through the ensuing years, she developed serious balance problems, loss of fine sensation in both hands, multiple muscle pains, deep aches, weight loss, and painful feet. Colleagues dismissed her distress as being the Swedish equivalent of a ``tender-foot."'' She began on a endless cycle of trips to doctors, each examining her and referring her on to another for new tests while suggesting stress as the likely cause. She became depressed and contemplated suicide. Comments had been: ``You should know how it is for women of your age. You should just live with it!'' Sixteen years later, a friend noticed her blue hands and suggested Lyme disease, confirmed it with blood tests, started her on IV penicillin, then oral penicillin, then oral tetracycline and finally IV cephalosporin. These 9 weeks total of antibiotics stopped the progress of her symptoms and gave her tremendous relief from the burden of being underdiagnosed, non-treated and trivialized. However, on-going neurological damage due to long-term, untreated and then partially treated infection left her disabled enough during her last 9 years of work that she was forced to retire early. She said that while the infection was important to her, it ``meant a lot to Swedish child neurology, which lost its only professorship at my retirement. Never pat women on the shoulder and say, 'You know, women of your age..''' Her article is Lyme Borreliosis from a Patient's View-point in Scand J Infect Dis Suppl 1991; 77: 15-16.
In 1987, the editor of the Finnish Medical Journal, Dr. Ilkka Vartiovaara, visited Canada and photographed a bug that bit him. Three weeks later, he had pain in his feet, knees and wrists, bone-deep chilliness, and pronounced losses of sensation, hearing, balance, energy and eyesight. He had dermal hyperesthesia and other severe bodily pains. He wrote in Living with Lyme, Lancet 1995; 345 June 3, his description of the illness that followed his trip: ``Sixteen months later I could barely drive a car, type or work'' and had to listen to: ``Too much stress, Dr. Vartiovaara?'' A year later, he received a diagnosis of Lyme disease with the help of an American colleague and began aggressive ceftriaxone IV treatments. Unfortunately, the IV's respite from his worst symptoms was too brief and too late to save his occupation. And rounds of oral doxycycline caused improvement but likewise did not last. After repeated on/off attempts at such treatment, Dr. Vartiovaara was forced to retire at age 45. A year later, his Lyme PCR turned positive. Despite new bouts of antibiotics, he wrote, ``I am 49 years old, an invalid with a totally unknown prognosis.'' He deplored ``the label of chronic complainer which is put on Lyme victims.''
In Jan.'00, I wrote in The Physician as a Patient, Prac Gastroent 24; 1:28, of the acute onset in myself of chilliness, prostration, rampant cardiac arrhythmias, hyperesthesia of the skin, hyperacusis, excruciating muscle pains, painful facial and back muscle spasms, weakness, itching, sweats, tinnitus, and waves of malaria-like symptoms without the fever. Having had a ring-like rash, I called Dr. Joseph Burrascano who told me that to save my health and occupation, I would need to get immediate testing and then antibiotics. From that day 3 years ago to this, 2-22-2000, I have required IV or oral antibiotics. Of the three tick-infected doctors, I was the oldest at the time of onset of acute symptoms. As a result of having received continuous antibiotic treatment, I am the only one of the three who is not yet so Lyme-disabled as to be forced into unwanted, premature retirement.

Tell me what's the difference between chemo for cancer and lyme treatment ? Nothing ! Catheter's, PICC's, huge doses of meds that can make you ill, extremely strong drugs for pain, insomnia, vertigo, etc. A lenghty recovery period, if at all. Sounds pretty darn similar to me.
No one, and I mean no one, should ever belittle, or condescend to anyone with this horrific disease unless they've walked a mile in their moccasin"s !
 

Lymetoo: Thanks for the kind words..I have recently read that you are finally off abx(unless I am confusing you with someone else) and are feeling good..I hope this continues for you...oh, by the way..I read your post and you made mention something about crying for three years..in my post I said three months..I hope that's what you meant..or did you mean yourself? anyway, I hope you didn't cry for three years straight..that would have been horrible

lymiecanuk: I hope that you longer have your nerve pain,..I understand completely what that feels like and I would not wish it upon another living soul..

twoangie: I can't wait to start reading the info you provided..I skimmed over it..Sadly, I don't that my ex would get it..if it's not cancer it's just not that bad then...my therapist said it is time to move on...
: )

NP40: thank you...your son..sounds like he went through a lot ...and sounds like he had you right by his side...I have to say my parents have been so totally understanding..they couldn't believe how sick I have been..what has been so totally frustrating for my mother( and me too) is the length of time it has taken for me to come this far...
Ihope your son is okay now...

thank you so much again...in light of all the negative things that are happening here lately with negative posts..the goodness of the many people here will prevail..

CAthy

 

quote:

---

Originally posted by 2bostons:
Thanks everyone:

Lymetoo: Thanks for the kind words..I have recently read that you are finally off abx(unless I am confusing you with someone else) and are feeling good..I hope this continues for you...oh, by the way..I read your post and you made mention something about crying for three years..in my post I said three months..I hope that's what you meant..or did you mean yourself? anyway, I hope you didn't cry for three years straight..that would have been horrible

---

I know I spent a whole year wondering when I'd get even SOME response from the abx! UGH! Yep, I'm off....so far, so good. I'm on the phase out protocol now.

------------------
oops!
Lymetutu

 

My family would sit around and pray at every gathering for my sister with breast cancer but not a word was ever said to me and husband about our lyme. If I had known about all the politics surrounding lyme I wouldn't have told anyone. Anyway, my sister is great--totally recovered and my husband and I suffer on--in silence because my family doesn't believe in lyme. Oh, yea, they aren't ignorant people, brother is a doctor and father is a retired mal practive attorney for insurance companies mostly.

You are fine and you are well rid of the girl friend--God has someone else for you.

L
 

Cave76..you've got my record beat? i hope that you are recovered..since you mentioned that this has been a horrible memory for you..thanks for the spoon theory..i really like that one...i just got another bicillin injection today..slightly sick from it but i know it's getting better!!

hopeful123
 

Hi Hopeful...I have to say that this has helped me a lot too..i will probably refer to it everytime I feel like beating up on myself...

Cathy
 

I am a former burn patient. I am burned over 60% of my body. Every day in the burn center they scubbed my burns with a steel mesh brush.

Every hour they turned off my respirator, and as I gasped for air they poured water down my throat to suck out soot.

I would rather spend 10 days in the burn center for every day of Lyme.
 

When you are told that someone has cancer...

A certain image pops up in your mind.

Most folks these days have some first hand knowledge and experience with this subject.

However..

When you say you have "Lyme disease"..

People often stare at you as if you were a two headed mule.

To top that off..

Folks were told for years that Lyme disease was "rare" and if you got it.. it was "easy to cure"... and no big deal.

Originally the treatment for Lyme disease was "nothing" because they believed it went away on it's own because eventually the rash would disappear.

```````````````````````````````````````````

As for crying...

Have you ever heard of the Chesepeake Bay?

Well....

From the tears I have cried since having Lyme...

It has doubled in size.

``````````````````````````````````````````

The pain from Lyme disease can be so bad that..

Some folks are on Morphine to help control the horrible pain. Others are on MULTIPLE narcotic pain meds.. and some are on pain meds for years on end.

Some folks have committed suicide due to the pain, misery, and daily suffering caused by Lyme disease.

Some folks have multiple system involvement. Lyme patients are not dealing with one specific area.. as in a broken leg, for example.

Some folks have chosen surgery to help relieve the pain caused by Lyme... sometimes even multiple surgeries.

Some folks have died from herxing.

Some people with Lyme don't have the illness by themselves. Often spouses and children are also infected and suffer. Cancer doesn't usually cause so much destruction in one family by multiple members having it all at the same time.

Some people have gone blind.. or deaf... and countless others have become permanently disabled.

Lyme will eventually be recognised for the serious infectious disease it is... some day.

I am sorry you have this burden to deal with now because of other people's ignornace.

Keep on feeling better...

And let your mind be free from this topic that troubles it.

OK?

------------------
If you get the choice to sit it out or dance...

tincup..thank you ..your reply made me tear..tear..not cry : ) ..I always read your posts and often wonder if you are fully recovered or not..i hope you are completely healthy because you do so much for the rest of us..i sure hope this disease does get recognized for what it is..

so people won't have to suffer with it as much or at all for that matter...
 

Thanks for the kind words.

Not to worry about me.

Ever see the "crash dummy" that does the car crash tests?

I am the oficial "tick borne disease dummy".

Every time they discover a new tick borne disease.. I am right in the middle of the mess... checking out the treatments for it... like a BIG OLD dummy!

That's my job!