posted
Hi! I've been doing my research for Lyme and am confused. What is the prognosis for people who have had lyme for several years? I'm searching for a doctor in Indiana but my pain mangement doctor is sure that lyme is causing my problems.
I've been diagnosed with Fibro, TMJ, Myofasial, Raynauds, and have had extensive dental work as well as several autoimmune disorders.
I had a rash 19 years ago when pregnant with my son (after picking blackberries) that started on the palm of my hand and finders. The rash turned to bruises then spread to my feet and all over.
I may have had it prior to that because I had several symtoms growing up. I had what I now know as the HERX reaction when taking Doxy after having my last child and she has several symptoms as well. She was premature as well.
I'm currently on disability and have no energy or drive to do anything after being so active several years ago. Will the treatment give me back energy??? Will the pain go away? I've read various outcomes!
One other thing that confuses me....why do doctors believe in fibro and are quick to diagnose an illness that has no known cause, outcome, etc. when lyme is proven.
It's frustrating because I've gone to over 40 doctors and have had many treatments that don't work. My rheumatologist said that lyme doesn't exist in Indiana and I went into the CDC website and there are quite a few cases.
The area that I grew up in has been noted as one that has a high number of lyme problems! My oldest daughter is pregnant and if I did get this as a child, she may pass it on to my first grandchild. She had Bell's Palsy and a mono like illness last year so I worry.
I'm hoping more than anything else that my children can be cured!!! Thank you for any answers and for letting me vent!!!
[ 19. January 2006, 02:18 PM: Message edited by: gae ]
Posts: 13 | From Greenfield, IN | Registered: Jan 2006
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bettyg
Unregistered
posted
Welcome Gae to the lyme board! You will learn a lot here.
lyme disease mimics 300 other illnesses so fibro is 1 of misdx we get first..... I was misdx for 34 yrs. w/other illnesses galore.
I've been on abx/yeast meds...15 meds for ALL my health problems now for 1.5 years; no improvememnts. 100% fatigue, no energy, and 24/7 pain .. so can't answer your questions there.
Please print off TREEPATROL'S NEWBIE LINKS 8 pages+, and then mark them off as you read them as Tree constantly updates as needed.
Print off Dr. B's 2005 lyme guidelines...40 pages; you will use this info over & over so read it over daily.
Gae, I have a favor to ask. Please edit/PENCIL icon your post and break up your LONG paragraph into lines of 6-8 lines of text and DOUBLE SPACE between paragraphs for those of us with chronic lyme who can't read text as it shows right now.
From what I read, you have NOT had western blot blood tests done for being a positive lyme disease OR CO-INFECTIONS. I'll copy/paste info here for you on testings.
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 for their current prices effective May 1, 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!
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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posted
Thank you for your reply. I edited the post. My vision comes and goes.
Some days it's blurry and I can't read.
I am very anxious to find a doctor because I've had most of the symtoms and my pain doc is sure I have lyme.
I even had a HERX reaction after my last child and didn't know what it was at the time.
I had an infection and my doctor prescribed doxy. I got much worse after I had taken it a couple of days.
My fever went high, I felt horrible and I had a blood blister like rash up to my knees. My doctor had never seen a reaction like that.
I'm used to fighting battles since I've had chronic pain over the last several years though we shouldn't be required when the evidence is there!!!
Gae
Posts: 13 | From Greenfield, IN | Registered: Jan 2006
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Welcome Gae-
The prognosis can be very good with consistant treatment. The trick is to find the one that works for you.
I believe folks that can't fight off lyme have something that has compromised their immune system. Discovering that and getting healthy is key to our bodies fighting off lyme. And then you can throw co-infections into the mix just to complicate matters.
I've had lyme 6-7 years and can say that I think I'm almost well.
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Gae
I have had Lyme and Babs for 20 yrs- Very sick the whole time-- ( I had what I now know as a picture perfict Lyme Bullseye bruse weeks before I got sick)
I figured out I have Lyme 3 yrs ago-
I took low dose of doxi in the beganing (mistake)-- then upped dose after about 6 months--much better
Took doxi for two and a half yrs- (Way to long)
Then found a LLMD Took 4 months for appointment- LLMDs are bizzy --
I started treatment for Both Lyme and Babs 8 months ago-- (co infection)
I am now feeling perty good-- I can see the light-- and its getting brighter every day--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Just looking at your questions...
quote:What is the prognosis for people who have had lyme for several years?
The trick for those with chronic Lyme is to get the bacterial load down to a manageable level -- where symptoms are mild to nonexistent. I think of it as remission, as there is currently no way to measure if a "cure" (killed all the bugs) exists.
I would consider myself in remission, and many patients achieve this, even after years of being undiagnosed.
quote:Will the treatment give me back energy??? Will the pain go away?
Yes, and yes! My symptoms are very much like a fibromyalgia diagnosis (I recently read up on it, luckily didn't know it before!). My energy is back! This past year, I had very tender trigger point pain near both collar bones -- gone. I had extreme lower back pain -- gone. I still have some pain in my hands and feet, and a little stiff neck. But I work 30 hours a week as a dance teacher, gymnastics instructor, and library book shelver!
quote:One other thing that confuses me....why do doctors believe in fibro and are quick to diagnose an illness that has no known cause, outcome, etc. when lyme is proven.
A decade ago, fibro and chronic fatigue were considered "yuppie diseases," i.e. phony. (I am currently reading "Osler's Web," about the early history of CFS. Very insightful about our dilemma.) Funny how that has changed, and now Lyme is the new "hysteria."
In my opinion, since chronic Lyme is expensive to treat, insurance companies don't want to acknowledge it. Heck, treating too much of it may put them out of business, so there is a downside in getting them to admit that we have it -- we may be cut out of buying insurance.
It is easier for insurance companies (and they often are the ones lobbying the government, and paying for medical research) to pay for low-cost "fixes" if you have CFS or fibro. Pharmaceutical companies (who lobby the government and pay for medical research) are happy to have you on their low-cost products forever.
I hope you are looking forward to feeling better soon.
Regards, Sharon
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Wow, what a story. You should be so thankful that your pain doc figured this out for you.
The prognosis is impossible to tell. Some of us get better more quickly than others. Some don't seem to find anything that works.
It depends on a lot of factors. The more you read on this site, the more you'll come to see this.
Sometimes there's no rhyme or reason to treating this disease.
There are many coinfections that can be passed during the same tick bite that transmits Lyme Disease. These have been found to cause a lot of trouble with people getting well and need to be treated before Lyme treatment can be successful.
There are people who can not release the toxins that are created by the bacteria as they die (causing the herxheimer reaction) and just get sicker and sicker.
We are learning more all the time about these diseases.
You say you are trying to find a doctor. You should go to "Seeking a Doctor" forum and post your location there.
If you can't find someone in your area, some of the Lyme Literate doctors (LLMDs) are willing to consult with your doctor (best case-your pain doctor since he believes you have Lyme) to treat you.
Let us know how things work out.
Corgilla
-------------------- "I'll never forget good old Whatsisname." Posts: 694 | From PA | Registered: Jun 2003
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posted
It's frustrating because I've gone to over 40 doctors and have had many treatments that don't work. My rheumatologist said that lyme doesn't exist in Indiana and I went into the CDC website and there are quite a few cases. --------------------------------------------------- Funny if it wasn't so sickening. Borrelia "infects" us humans as any other mammal. Read up and you will find borrelia is a natural resevoir in almost everything! "Lyme" may not be in Iowa but borrelia sure the heck is. My protocal uses several silver products and oil of oregano. These two products have proven antimicrobial activity and are helping. Use probiotics to resupply the good flora lost. If you hit a wall some oral abx should be enough to finish the job. fingers crossed:)
best of luck and tell us how you do.
Posts: 731 | From Humble,TX | Registered: Feb 2005
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posted
I agree that the goal is to get your bacterial load down as much as possible so that your own immune system can keep the rest in some sort of check...
For me stress will always bring on a flare... So that is the one part of my life I am trying to manage better .
I have had Lyme for most of my life , but didnt get a diagnoses until I was 26 ( i;m 34 now)....so Its been about 8 years of treatment.
I went from 20% functional to 80%...it gets better.... You have to do lots of trials and errors bit you will hit on the righ tcombo for you and as time goes you you get to know your own body and way it reacts and then can gauuge what you need.
Good Luck and dont lose hope! Posts: 437 | Registered: Sep 2004
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posted
Thank you all for your replies. I've read so much recently, my eyes haven't been working very well!
I did post about finding a doctor in Indiana and haven't had much luck so far. My pain doc is in Houston and so I need to find a doctor that is closer to me for this treatment.
He said that he'd be afraid to treat me from there because of the reactions, etc. I will have him work closely with a doctor if I can find one!
My life has gone from active to a couch potato and I can't stand it. I'm a mother and I spend most of my time on the couch with zero energy. It is depressing and I'm desperate to find help!
I want to live my life rather than watch it go by and more importantly want to make sure that my kids are okay. I truly believe I may have passed this on to them.
I thank you all so much for your help and suggestions!! I'm going to fight as much as necessary to get this taken care of. It's frightening to see the ignorance about this illness in the medical community.
I'll keep searching and again, thank you all for your help!!
Gae
Posts: 13 | From Greenfield, IN | Registered: Jan 2006
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posted
Gae, I know you're looking for an LLMD in Indiana, but there is an excellent one in Missouri, Dr. C, who I've read about on this site. That might be close enough to you. Certainly closer than Houston.
Look him up. I've only heard about him, and have read something he wrote about Lyme disease, but I was very impressed w/what I read.
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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posted
Thank you all for your help. At this point, I'm waiting on insurance approval. My cobra ran out and I wasn't notified by my carrier as I should have been. It's been expensive to have the side effects treated...pain, rheumatologist, etc. I feel like I'm waiting for my life to begin. I'm on the couch most days, feeling guilty because I can't take care of my kids like I feel I need to do. They are 14 and 18 so they can take care of a lot for themselves but I want to be able to do what I used to be able to do. It shouldn't be this difficult to find a doctor that is open minded but I've read and understand what has happened. I'm hoping that one day, it will not be so difficult!
Gae
Posts: 13 | From Greenfield, IN | Registered: Jan 2006
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