posted
Hello. I thought I would introduce myself and my recent potential lyme struggle. My name is Michelle, I am 19 years old and recently, after a Christmas vacation in the NY Catskills, I started developing weird symptoms. Here they are:
blurred vision, spots, some pain, bloodshot (r eye)
tingling, buzzing feeling in left hand, worsened with clapping/excitement, heat
dry, flaky, bumpy skin patches (not too many, no discoloration)
breast pain
loss of muscle tone
slight loss of balance
whoozhy, lightheaded feeling
I am happy to have stumbled across this board, and would like to learn more from the people here. If anyone would like to talk, I have listed my AIM name in my profile.
Life has been very draining as of late, with all concentration glued to searching for a diagnosis,
especially since I am a believer of holistic living and conventional doctors have been getting the best of me lately, trying to convince me I
have a pyschological problem and pushing their filthy anti-depressants on me, laughing when I inquire about IgeneX after getting a negative reading with lab corp.
It is as if they want people to believe they don't have lyme so they could benefit off of writing prescriptions.
They really have got their values backwards. What a shame.
Anyway I hope everyone is doing well on this cold thursday noon.
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi, pru!
Wow, so sorry you have been through so much, but glad you made it here! You will find information on everything Lyme here, from symptoms to treatment options to horror stories to success stories. And lots of sympathetic ears.
The very nature of your symptoms, coming from so many different categories, really suggests tick-borne disease, Lyme and its co-infections. I have had most of the symptoms you describe, save for eye problems and facial pain, but I have heard of others who have those.
The breastbone tenderness is a weird one, isn't it? Much later (thankfully), I read that this is a symptom of fibromyalgia. Most of my symptoms have completely resolved after being re-treated this past year for Lyme and babesia.
Perhaps what you need is not another doctor, but a better doctor. Check out the Seeking a Doctor forum for suggestions of Lyme-literate doctors in your area.
And if you strongly feel that you were infected in the Catskills, try seeking a doctor in upstate NY, as different strains of bacteria produce different symptomology, and doctors tend to figure out what works in their area, IMHO.
And check out the "newbie links" at the top of this page, for TONS of information. Take your time, but the best thing you can do for your health is to understand what you're up against.
Take care, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
| IP: Logged |
ticked in ri
Unregistered
posted
Welcome to the Board!
I too have visited the Catskill Mountains in NY. About 5-6 weeks after my visit, I developed odd symtoms. I also live in RI which has a very high tick population. I don't know if it was a Catskill Mt tick or a RI tick that got me.
I too visited many doctors over the course of many months. My own research lead me to believe it was lyme disease. I sought out a doctor who was knowledgable about Lyme disease and willing to treat me with abx regardless of the lab results.
I started abx about 1 year after my 1st symptom appeared. I have been on abx for 9 months now and feeling much better. Most of my symptoms have been resolved. I just have some mild achiness left in my forearms and calves and and occassional muscle twitch. I hoping to be off abx within 6 months or so.
You need to find a doctor who is knowledgable about lyme disease and who will test you through Igenex. Someone who is willing to try abx to see how you respond.
posted
Uh....I don't think the other coast is any better!!
you've been given really good advice here!!
Here is a lyme symptoms list for your review:
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
The following signs/symptoms may be present in those infected with Babesiosis: Fatigue* Arthralgias* Myalgia* Drenching sweats* Headaches* Emotional lability* Depression* Dark urine* Splenomegaly* Dizziness* Nausea and vomiting* Cough* Dyspnea* Fever* Chills* Hepatosplenomegaly* Jaundice* Malaise* Shortness of breath* Bleeding tendencies, bruising* Thrombocytopenia* Hemoglobinuria* Hyperesthesia* Pulmonary edema* Encephalopathy* Low to normal range leukocyte counts* Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia* Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
Be sure to get checked for babesia too!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Hi Pru,
I'm sorry you are here but glad you've come to the right place for help.
pm me if you want names of LYME LITERATE MEDICAL DOCTORS in your area.
I go to Dr. S in Howell. There are quite a few good doctors in Central Jersey.
Have you read the newbie links?
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
| IP: Logged |
Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
quote:Life has been very draining as of late, .. What a shame.
Everybody here almost had such unpleasant encounters with ducks.
But your life is in your hand not others.
Send your samples to Igenex for a whole pannel test including co-infections, so that you will have something positive back.
Why a whole pannel, cause you won't want to miss the target (the Lyme). So shoot as many as possible.
Positive results will settle you down, convince you and others esp. Drs to treat you.
Before I had positive results, I was almost convinced by the drs and nurses that I had mental problems.
Now looking back, the Positive results convinced them and me.
You need something positive to drag you away from the the sea of uncertanty-mental problems.
And mental problems are just symptoms, most might have pathogen (bacteria, virues etc.) causes.
Don't slide into the sea. Too many tragedies happened this way.
Good luck.
Posts: 1078 | From Fairland | Registered: Apr 2006
| IP: Logged |
posted
Welcome Michelle,this is a great site for imformation! Remember...all questions are good questions! Alan
-------------------- Charter member of the ~ Delux Toasting Club ~ Our Moto: "Take No Prisoners" Posts: 95 | From San Diego | Registered: Nov 2005
| IP: Logged |
WildCondor
Unregistered
posted
Welcome to Lymenet!
The Catskills are loaded with ticks, especially this really mild winter we had here in NY. I have been bitten many times in the Catskills. It really does sound like you have been infected, that is a large amount of symptoms that you can pinpoint started after you were having Christmas there. Where are you now? I ask because although you are sick of doctors, you still need to get to a good Lyme Literate doctor to help you. Email me :[email protected]
IP: Logged |
bettyg
Unregistered
posted
pru, Welcome to this 24/7 LYME support group board! Good job listing all your symptoms! Towards the end you had one long paragraph.
please edit that long paragraph to short ones entering often and double spacing for us neuro lymies who can't read as is ok. Thanks.
Here's a bunch of info as well.
Here's TREEPATROL's and Tincup's combination newbie links.
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.
Extensive info in Treepatrol's newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
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.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated
YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board. Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE
mention you have lyme and marshall protocol, they will give you 20% off! Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that's why I currently have LONG addresses vs. short tiny ones! I'll keep trying.
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.
NO way to file for insurance since it's only a brief letter you get back from them even WITHOUT a 501 federal tax no!
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!
IP: Logged |
posted
Reading your post brings back such bad memories!I had all the same sx as you have, including the eye problems. You're very astute to recognize them so quickly.
If you start treatment soon, you may have a better chance to fully recover than some of the rest of us, so find an LLMD ASAP and get started on abx.
Good luck,
Patti
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
| IP: Logged |
My personal opinion is YES, I was impressed by Igenex's breakdown of the numbers, etc.
Bowen I was diappointed to receive the letter only for $250 donation. I had NO co-infections and lyme did show up.
Igenex numbers are easier to understand using the MDs interpretation of them from Dr. C & others who defined them for me.
PRICEY - yes! I don't know what state you are from; perhaps if you are from California; it might be "in the network". Wouldn't hurt to find out since you pre-pay when you give blood.
Yes, after positive IGX tests, local clinic sent blood to Mayo Clinic. They tested only 2 and 5 bands of the 16..I was NEGATIVE in their opinion.
Yes, it's worth every dollar for a positive testing plus POSITIVE CLINICAL dx by your PCP. good luck.
IP: Logged |
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/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Wink]](wink.gif)
Printer-friendly view of this topic