posted
I am very curious to know how people are doing 6 or more years after diagnosis and treatment of lyme .... it has been over 6 years for me. and I am so much better than when I first started..had no clue to what was going on or why and i am an RN...had to stop working,,,etc..you all know about the disease.. I still have weak times and joint pain..i try not to talk about it to anyone, not even my family because the stress was too great and I sometimes still feel as if i am suffering in quiet desperation....i know i need to find a new doc...he is illiterate about lyme...same old thing...I should not have any symptoms after 6 weeks...ha!! I had a PICC (IV) line in for 6 months and was so sick i thought i surely would die ... I was so traumatized by the experience and so misunderstood by friends of 25-30 years, family , etc.. that was the worst part. so now I try to pretend ,,even to myself that my joints, and body do not hurt...i have not had any antibiotics in about 5 years... I would love to hear of other peoples experiences and possibly how you cope after years go by.. I feel it gave me a sort of post traumatic stress also...but i am still trying to pretent i am well..... thanks in advance catherine
Posts: 3 | From usa | Registered: Feb 2006
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
dont pretend! If you are having symptoms, there is a REAL possibility of relapse.
MUCH more is known about Tick Born Diseases now than 6 years ago. my brief history: First tick bite, EM rashes and diagnosis in 1991. treated 2 weeks tetracycline, no symptoms for 10 years.
Possible reinfection or relapse fall of 2000. 2 months iv rocephin, 6 months orals. No symptoms for almost 4 years.
RELAPSE in fall of 2004--right after completing my first triathlon, excercising regularly and feeling like I was ON TOP OF THE WORLD.
I have been unable to work since May 2005. I am now in excruciating pain. I am taking a break from my current treatment which is a cyst busting combo. It is kicking my butt HARD. I have NEVER been in so much all over body pain before.
I thought I was CURED and only had some brief pains or headaches...but this disease can lie dormant and also change form! It is quite possible you still have it and you will need to treat it.
IT IS VERY traumatic. I really understand and relate to that. But you and your family need to be honest about your needs and your health concerns!
Dont mean to scare you, just open you up to the possiblity. When I started having symptoms, it took 5 months until my physical therapist sat me down and said--LOOK--this is NOT a sports injury---you are in denial, there is something bigger and systemic and you need to be honest with me and yourself or you wont ever get better. I was hiding that I had had lyme.
Hope others will share. Keep posting, dont let me scare you away! Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I am sorry I laid into you alittle hard.
I want you to know that this disease is sodifficult for EVERYONE and that I truly DO understand your apprehension in letting ANYONE close to you know about how you are feeling lately.
I hope you can find a good LLMD or a good friend or both so you can get the treatment you deserve! Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
trails...thank you for your support..you did not scare me away..I appreciate your concern and advice...I just haven't felt well and it is traumatic to consider relapse especially without a doctor who understands...I am looking into a new doc...but as you know all takes time...and right now i feel overwhelmed...thanks for your encouragement...i will continue to post..God Bless You....Catherine
Posts: 3 | From usa | Registered: Feb 2006
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bettyg
Unregistered
posted
welcome Catherine to the board!
Catherine, may I ask you to edit/PENCIL icon your above posts to 6-8 lines of text per paragraph and DOUBLE space between paragraphs? We chronic lymies can't read/comprehend LONG continuous paragraphs. Thank you for helping us, help you out. After you do this, I'll come back and read what you wrote originally. Meanwhile since you are new, giving you some basic info.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often.
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
TESTING FOR LYME DISEASE ... 3 main LYME TICK BORNE LABS IN USA!
The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should only be sent to these 3 USA's Lyme testing labs:
IGENEX LAB: 797 San Antonio Road Palo Alto, CA 94303 1.800.832.3200.
(If the early test, called IGM, is negative; the later test IGG is NOT done!) Please see their web site: www.igenex.com CALL for their current prices effective OCT. , 2005 and
to print their REQUIRED form, which MUST be signed by the doctor, DIAGNOSIS CODE NO. COMPLETED!; Medicare's UPIN no., and your blood taken EARLY in the week so it doesn't sit in post offices! Example, have it taken Mon. - Wed. Afternoon tests show more positive lyme results!
Here is the site to PRINT THEIR REQUIRED FORM to send with blood sample. For me, I printed the FIRST option available on the forms.
Write on their forms you want results FAXED to their drs. Office; snail mail paper copy so it's not lost like mine was!
NON-Medicare patients must PREPAY by check or credit card for the tests since they do NOT handle insurance papers. Medicare patients do NOT have to prepay!
2. MDLabs from NJ, www.mdl.net see their site; they too require their own form. NO prices are listed; you must call their 800 no.
3. BOWEN labs from Florida, www.bowen.net 727.937.9077 You pay $250 tax-deductible payment for testing, and they send you a picture of what shows up in your blood. You also get the results within 24 hours after the blood is received at Bowen. They are also a 501(c)(3) lab and you can take the donation of $250 off of your taxes if you live in the US. They fax the results and then about a week later send the actual pictures. Lyme should be diagnosed clinically using medical history in addition with the Western Blot blood tests as no currently available test is definitive in ruling-in or ruling-out infection with Ld pathogens, or whether these infections are responsible for the patient's symptoms.
NOTE: Please send a copy of your health insurance card to YOUR insurance comany (mine is Wellmark BC/BS, Iowa) for them to submit to BLUE CARD (handles other states) them to FORWARD to California's Blue Shield health insurance company since they will require that, DRS. Diagnosis Code No., and which date of service is correct (IGX has 3 different dates on their paid receipts....use the DATE OF ACTIVITY!).
FYI - mine was returned to me after 6 wks. After submitting; dr./blood lab failed to show DRS. DIAGNOSIS CODE NO. on their form! It went to 7 people to be returned to me! Disgusting!
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Welcome Catherine!
I've had lyme since 2000 at least. I tried to kid myself too- I just want to be well.
I have been on continuous oral abx treatment for 32 months. IV didn't do much for me either. I'm doing very well now and finally accept that I may always have to have treatment, hopefully not continuously, but periodically until a real cure is found.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Catherine, I've been at this since July 99. Did abx, you name it I tried them for almost 3 years. I waxed and waned for a year and then started going downhill rapidly. I started on abx within 10 days of flu-like symptoms from hell that never went away. Soon became disabled from work and life.
Three years ago this May I stopped abx and went on the alternative route. Rife, naturopath doc, colonics, cleanses etc. Went even more alternative 18 months ago and started seeing a muscle testing doc.
Today I'm so much better. I have a few weeks of remission the set backs that are easy to fix. I'm not symptom free yet and I'm not using the cured word yet. But I will!!!!!!
This is hope, never doubt it.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
20 years and last three years treated with everything known to man has been thrown at it.
basically my life is in the toilet.
But this is the truth and I think all the truth should be told. Not just the encouraging ones,which BTW are really important to me and others.
But also the real truths of our daily lives.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
The truth is my life was in the toilet 4 yrs ago. I had throw all traditional medicine and a LLMD recommended extras and was getting nowhere. I felt I was dying slowly but surely.
You can either be a fighter or a flighter. I'm a fighter. I'm here for the soul purpose of encouraging those of you that are not getting anywhere with traditional medicine.
I'm not using the word cure yet. I will keep fighting to use that word. Right now I'm having periods of remission that are a sign that I'm winning this war. I've called this a war for 6 years and I will not accept anything less than that victory.
I can't, never did anything. The Little Train that Could, I believe that's the childhood book title I remember. Might be good reading for some today.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
[ 09. March 2006, 02:22 PM: Message edited by: OptiMisTick ]
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
RE: The toilet-
I am taking my meds, doing alternative therapy's,diet,supps you name it.
I am an opptomistic person with a personal mantra:
Never give up/ never give in.
But the fact remains after 20 years & three years of intensive treatment my life is in the can.
yes I can drive to the grocery store. I am no longer staring into space.I am grateful that I have abx treatments .If not I would have ended up a catatonic-wetting myself in some nursing home by now.
But there has to be to life,and there is much more that I have wanted out of my life.
I am not whinning here. But I have to be honest. And I think that is what this board is about. Honesty.
There are times for blowing sunshine & cherring and suppoting each other . And there are times when someone asks a question about how your life is 6 plus years with lyme.
They ask a direct question and I think they deserve a direct answer. Warts and all.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Dana,
Do you have room in that toilet for me too??
This disease does indeed bite the big one. I really thought that just having a diagnosis would be a big help, but not really. Not for me anyway.
Im a true fighter as well. You have to be with this disease. I have yet to get on a treatment protocol that works for me, but man am I trying!!
I do believe that I need traditional and alternative therapies to fight this. I know not everyone else does but I feel I will need it for me.
I come here, I learn. I try not to be scared to death by some of the stuff I learn and I try to do whats best for ME and learn from others what works for THEM.
Ive been sick almost 6 years now. Im only 33 and yet I feel over 80 most days. I hope you find the answers you are looking for and that you can return to your remission status and stay there forever quickly!!!
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
[ 09. March 2006, 02:22 PM: Message edited by: OptiMisTick ]
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Hi Optimistick,
Good advice. But, can you tell me what you meant about Fatigue being one of the three major sins? How can fatigue be a sin?
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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