I am not looking for medical advise but i need to know if this sounds like lyme. I am looking into a doctor but i just am not sure what "this" is.
I was diagonsed with Neurocardiogenic Syncope and Orthostatic Intolerance all forms of dysautonomia about seven yrs ago. But currently non of the treatments have worked, other than bedrest. I recently went to my local family doctor and mentioned lyme but he sorta dismissed it, order the basic blood draw for lyme.
Anyways my current symptoms are, headaches 24/7, migraines, extreme fatigue, stiff/painful neck, jaw pain, blurry vision, floaties -eyes, pain in the eyes, oversensitivity to light/sound, pain/buzzing in ears, bladder troubles, joint pain, back pain (i go tthe chiropactor weekly for this), muscle pain, chest pains, whole body spasms, pressure in the head, dizziness, falling down (heavy legs), lightheadedness, insomnia, staying asleep is hard, memory loss (short), confusion and difficulty thinking. these symptoms change alot, and pain kinda moves thruout my body.
Some of this is probably the NCS/OI but i don't think all of it is. I am not sure if it's lyme or possibly something else, as i do live on a family farm (active), have goats (had pigs, lamb, and rabbits, but handled a lot of animals in the past thru the fair), and we have a woods i have gone thru many times.
right now i am at the end of my rope, i was doing better but right now it's like i am ina hole and can't get out...i am probably calling a lyme doctor sometime this week once i talk to my mom. I am 20 yrs old.
thanks susie Posts: 6 | From Ohio | Registered: Jan 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Certainly sounds possible. I would get tested via Igenex Labs and then see what the results are from the Western Blot and co-infection testing.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Hi Susie, Welcome to LymeNet. You'll find lots of reliable, useful info here.
So sorry you're having so much to deal with. I'm not familiar with the details & symptoms of NCS/OI, but I think you're probably right when you say you don't think that is the cause of all your symptoms.
It's possible that your symptoms could be from Lyme and/or Co-Infections (Babesiosis, Ehrlichiosis, Bartonella, etc).
The "Newbie Links" in Medical Questions cover all aspects of Tick-Borne Diseases (TBDs). Read all you can.
I highly recommend you start with printing a copy of "Diagnostic Hints & Treatment Guidelines..." It's 33 pages of excellent info about Lyme & Co-Infections, written by one of the best LLMDs (Lyme Literate Medical Doctors) for doctors to use & patients to learn.
When reading it, highlight, underline, make notes in the margins, etc to make it easier to find specific info again. Read several times. There's too much to absorb at once.
Pages 9-10: Check list of symptoms is excellent. You may find a few more things you didn't know could be symptoms of Lyme.
Also read symptoms for "Co-Infections in Lyme", pages 22-25.
I recommend two things to start: 1. Continue learning all you can about Lyme & other TBDs.
2. It's so important that you see a real LLMD to evaluate your situation. They treat Lyme & other TBDs almost exclusively so they understand how complex these illnesses can be. They use labs that specialize in testing for Lyme & they know how to interpret the test results. They know that Lyme is a "clinical diagnosis" based on history of tick bite, symptoms, etc.
They also know the best antibiotics, correct dosage, length of treatment, etc that will be what you need if you do have Lyme. Too many doctors undertreat so the disease flares up again later.
Go to Seeking a Dr here on LymeNet. Put your location in the title. Info will be sent to you privately by Private Message.
On the left, check Support Groups in your state & surrounding states, especially Penna. They should have info about knowledgeable doctors fairly close to you.
If your Mother has questions, maybe someone in a Support Group would be willing to discuss Lyme with her. They would have answers to most of the questions that are sure to come up. If I can help, send me a Private Message & I'll be glad to call you and your mother at your convenience.
Some people here on LymeNet have medical training, but most of us do not. We share the info we've gained from our experiences with Lyme and Co-Infections. As they say, experience is the best teacher.
Keep in touch & ask as many questions as you need to.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
Susie,
I just wanted to say, I have had all of the symptoms you have listed. I have tested positive to Lyme, Bartonella, Ehrlichia, and mold issues. Treatment has improved most symptoms, though not everything is gone yet, as I had these things for 11 years before diagnosis.
I highly recommend that you be evaluated by a Lyme knowledgeable physician to be sure that these possibilities are properly considered.
posted
keep reading, my head is spinning but thanks everyone for the commments, i am talking to my mom about this issue...since well i am still living at home but hopefully an appt will be set up sometime soon or at least the proper bloodwork.
susie Posts: 6 | From Ohio | Registered: Jan 2006
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
the tests are notoriously bad- inaccurate. Lots of false negatives.
Sounds like lyme and/or co-infections to me, and I don't say that to everyone...
Might want to get tests for leptospirosis, bartonella, brucelosis, babesia and ?? syphilis as well as lyme. The screening test for syphilis (which is what they always use...) isn't very acurate either, especially in secondary/late syphilis. Better test is I think called FTA- something.
The "western blot" test with a *full report on all bands* is the best. Make sure before you pay for a test that all bands will be reported... best lab I think is Igenix- you can find them online. The Igenix lab may have a discount for low income or no/little insurance if you call them first. Many insurance co's won't pay for Igenix.
In particular the pain moving throughout the body sounds very much like lyme. The other things could be caused by lyme or any of the above.
Welcome to lymenet! Sorry you're going through this!
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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bettyg
Unregistered
posted
Susie, I'm copying/pasting info the 3 LYME TESTING blood labs in USA .....
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; 40 pages! you will come back to this often. He is the lyme literate MD, LLMD, expert for chronic lyme.
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. http://www.lymeinfo.net/lymediseasetreatment.html
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
I have a quick question, perhaps a new topic should be started but i figured i would post it in here first.
anyways, due to money problems i can't afford to pay a doctor at this point, my parents are still paying off a hospital stay almost a year ago. Anyways is there any of these doctors out there that charge less if insurance won't pay or the person can't pay? i mean i really want to explore the lyme issue but money doesn't grow on trees and other bills come first, mostly the farming stuff.
susie Posts: 6 | From Ohio | Registered: Jan 2006
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posted
I can't answer the reduced cost question, but in general your best bet on finding a good doc is to contact state support groups and ask them. Good lyme docs are few and far between and most people have to travel some distance.
There are three groups listed. Might try more than one, not sure if all still active. Click on this url:
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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but thanks everyone for the commments, i am talking to my mom about this issue...since well i am still living at home but hopefully an appt will be set up sometime soon or at least the proper bloodwork. ![[Smile]](smile.gif)
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i mean i really want to explore the lyme issue but money doesn't grow on trees and other bills come first, mostly the farming stuff. ![[Embarrassed]](redface.gif)
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