posted
I feel the need to express this because i feel sooooo darn lonely right now! My Husband thinks I am going nuts and a prozac will do the job.I feel like I am losing my mind today especially since my latest lab testing once again came up negative. Grrrrrrrrrr @ having to educate medical staff about false negative testing!
My story- In April I came down with some awkward sympstoms of being extremely tired unable to function and general unwellness. I thought my thryoid goiter was finally causing me to go hypo or I had recently became diabetic.I was cold all the time too tired to do anything. My skin had become dry. My eyes bothered me a bit etc.
I went to a new md because my reg. one had past away. She wasn't sure what it was but gave me fasting bloodwork. All tests came back normal nothing out of line. She sent me for some more testing and again NOTHING out of range! I blew it off as stress.
One of my coworkers said maybe it's periomenapause and suggested some vitamins. I was willing to try anything. They worked great for a few weeks. then BAM tired again same sypmtoms this time including stiffness and achiness, low grade fevers,trouble falling asleep, bowel /bladder dysfunction, trouble with remebering things too.I was Sooooooooo tired one day I fell asleep at coffee break while one of the girls was talking to me.
I still blew it off.I figured I was stressed out again.I ignored all symptoms by taking advil or having a small glass of wine.
At the end of June I developed a bladder infection taking me back to the md. She thought for sure it was a kidney infection because the blood and bacteria was so high. She prescribed cipro x 5days. Wow! day 2 of cipro had me feeling fantastic. I could function wonderfully.Maybe i just had this infection so long it was taking over. No worries now antibiotic is working great.Even my brain was working like normal. Being able to multi task again YIPPEE!
5 days after ending cipro I developed a strange headache of pins and needles around my scalp, lightheadedness,nausea, achey stiff joints and complete fatigue again, low grade fever and constipation. Went back to md I thought maybe it was side effects of cipro because my memory was getting worse again. She said prolly not the cipro should be out of system by now.I mentioned lyme, she said your test came back normal.Even my ct scan of sinuses and c-spine were normal. She reffered me to a neurologist.
Went to nuerologist her initial eval was basilar migraines. I said WHAT?!! how does that explain constipation,low grade fever, achey body and joints,etc.? I told her maybe lyme since I do live in an epidemic area. She sent me for an mri and eeg testing. Of course they came back normal.By this time my brain is spattering about and some serious cognitive issues are coming into play.
I told the neurologist (a different one in the practice) I just can't wait another 5 weeks to come back in. I need help. My brain is causing some serious foginess. I explained how I used nail polish remover instead of my facial toner. I explained how I walked away from the sales clerk who was speaking to me. I explained how I put the milk in the glass cabinet, etc.
Oh boy I knew she was listening now. I explained I live in a Lyme epidemic area. I knew she heard me but but but NOPE your test came back normal we'll do another eeg (sleep deprived this time)then we'll do a spinal tap. OUCH!! Now this neuro thinks I'm having seizures. I explain lyme can cause that. What about my fevers? What about constipation, what about the fatigue, achey joints? Grrrrrrrrrr she didn't listen.
I decided to make an appointment at a lyme clinic which i found in my area! Wow a clininc here in tim-buk-too! I called my reg. md so she knew what I was doing. She said she could clinically diagnose me but wanted to follow up on another blood test first.
I called today, guess what!?! negative again this time elisa as well as wb was used. My md is on vacation, if i'm still sick I have to make an appt. I explained that md was going to trial me on doxy. to see how i made out. NOPE i had to see someone else since my md left no note in my file.
Thank god I never cancelled my appt. at the lyme clinic. I go tomorrow. I know there they will understand what I'm going through! I need some sense and order back in my life. This whole thing is affecxting my whole life. My friends think i'm nuts and I'm scared stiff!
I know it must be lyme, everything else has been ruled out from another bladder infection to anemia,dieabetes, ms, etc. And since my symptoms come and go which i believe for the last year. what else could it be?
I already feel better getting this out. What a great place to be. I don;t have pm activated. but anyone willing to open post, i'd love to here your story too!
I will NOT give up. I will go on and I will fight for my health and well being!~
Terri
Posts: 4 | From Pennsylvania | Registered: Aug 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Terri,
Welcome to the board. Your story is a very, very familiar one.
You may want to post on the seeking doctor forums for an LLMD in your area. An LLMD is a Lyme Literate Medical Doctor. It's not an official specialty, but a term used for a doctor who really knows how to treat chronic Lyme.
As you are discovering, Lyme is not well understood and it is often poorly treated. You want to find somebody who really knows.
The tests are also awful. Lyme should be a clinical diagnosis. You can't rely on the tests.
My quick story is that it took 17 years for me to be diagnosed. I was bitten when I was 12. Had a bulls eye rash around a bug bite and had signs of infection. The ER sent me home with an antihistamine.
About 18 months later I got swelling in my knee that remained on and off throughout my adolescence. It was extremely painful and I never received a diagnosis. All my lyme tests were negative.
I had pain symptoms on and off ever since, that got bad enough a few years back they became debilitating. That brought me down the Lyme route.
Oh, and once in college, I put nail polish remover on my face. Didn't realize for a few hours. I think it was because I was waking up early for a flight, not the Lyme though.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Carol B
Unregistered
posted
Terri-if you are looking for some way to pass the time until tomorrow you can come to my Surprise birthday party and read a joke or two.
Laughter is good medicine until you can get to the Lyme Clinic-sounds impressive-what state? Maybe we should all move there.
Hope they treat you right-and you must tell us your experience.
When I hit recurrent UTI's and was treated with Cipro I always felt better- until the last round when I took one dose and immediately broke out in all over body hives-so that was the end of Cipro for me.
I finally found my way to an LLMD and proper diagnoses and treatment-guess what- haven't had a UTI since!
I wish you had posted this in Medical where more would have seen it.
Don't give up!
You need a WESTERN BLOT from IGENEX LABS in CA. Only MDL or Bowen would be acceptable after Igenex.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
Welcome Terri and good luck tomorrow.
Great job on dealing us about what you have been thru, etc. I too can't stress enough having your western blot igm & igg done by IGENEX where you'll receive a copy of it from your MD telling WHICH numbers are positivee, and then you can read Dr. C's explanation of it.
Speaking of that, I'll copy/paste my newbie's links/advise below, 16 pages since you don't have PM disabled.
ANYONE READING THIS, HIT YOUR "END" KEY RIGHT NOW to avoid reading what I'm pasting here ok! Bettyg
Welcome to this 24/7 LYME support/educational group board! Updated 8-28-06
8-7-06 NATIONWIDE SUICIDE HOTLINE 1.800.784.2433 now please! If you are feeling suicidal, please call the SUICIDE HOTLINE. We care about you.
Before I forget about it, all PM, private messages go to YOUR HOME email address.. If you want to keep info, file it in your HOME FILE FOLDERS. I named my folkder, LYMENETFRIENDS, and file those I want to keep there! Lymenet PM allows 60 notes only & they add up fast; so delete them promptly from lymenet folder.
Make sure on ``MY PROFILE'' you edit it to show you ALLOW PMs so folks can send you a private email vs. On public board. Also change the viewing notes to VIEW ALL NOTES vs. 30-60 days only. Very helpful when you do searches on specific topics.
When posting and you decide you want to quote someone, please do NOT use the BOLD, which is automatic. It's so painful to my chronic lyme eyes of 36 years. To delete the bold when quoting; here is the procedure:
Click on ``'', beginning of 2nd line will be [/QB] just delete these 4-5 characters! Now the text will be normal print vs. Bolded! For the newbies, many of us have problems finding the ``NEW POST'' or ``POST REPLY'', which is at the TOP and BOTTOM of screens in a BLACK BOX with white print! I did. Thanks so much!
Do NOT post long, continuous text in blocks; we neuro lymies can NOT comprehend or read them ok! Break them up by hitting the enter button often, and leaving one blank line between each paragraph ok. Remember, many of us have had chronic lyme for DECADES, and it's gone to our brains. Thanks so much!
Read the FAQ, frequently asked questions, at the top under POST REPLY; it's 15 minute read, and has time-saving tips in there for all of us to use ok!
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!
Betty Gordon's LYME/TICK BROCHURE with LDA info plus other stuff from Betty including: lyme books, support groups, lyme/co-infection illnesses, symptoms, diagnosis, treatments, hunting/gardening ... how to dress; how to remove ticks, etc.
Also, see Cheryl''s extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-10 other illnesses that tick is carrying...lyme, malaria, etc. http://www.lymeinfo.net/lymediseasetreatment.html
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.
To all reading this: please take 5 minutes and sign the below online petition on the 2 bills in USA's CONGRESS asking for a special LYME/TICK-BORNE DISEASE ``TASK FORCE'' be created; NO $$ for funding; it's strictly ALL-VOLUNTEERS on this task force we are asking for!
If you go to www.lymenet.org `s ACTIVISM section, look for posts about S 1479 and HR 3427 that are in Washington, DC. There are links there where you can read the full bill as submitted. Please go there and check if YOUR STATE'S senators and house of rep have CO-SPONSORED each of the above stated bill nos.
When you are in there registering yourself, please ask your family members and close friends/relatives if they would approve your signing online their name, state, city is optional, to the petition. You will show YOUR email address, and confirmations will be sent to YOUR email address confirming you signed the petition. There is nothing else involved...no money, etc.
If you have any questions, please send me a PM, private message, and I'll get back to you daily about this project!
I'll teach you how you can streamline this if you are doing multiple family entries with majority of the same info WITHOUT RETYPING it all! Bettyg is my nickname on lymenet.
The petition will then be sent to congress to the committee who is holding it up now! It's been a long time in getting this far folks, please help us SUCCEED in getting lyme/tick-borne diseases discussed and acted upon in congress! THANK YOU ALL!
Betty's ROLL CALL of MEMBERS WITH EXTREME SENSITIVITIVITIES TO LIGHTS, SOUNDS/NOISE, AND CHEMICAL SENSITIVITIES
mention you have lyme and marshall protocol, they will give you 20% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!
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.
]Driving daylight hours, be sure to wear DRIVING GLOVES and a LONG SLEEVE SHIRT/JACKET so you will NOT SUNBURN ! I got burnt bad on my 1st out of state trip to new LLMD in Minn.
I wear my darkest tinted RX sunglasses always with my NOIR wraparounds over them, and my floppy straw hat too; shields my face/side views
NOTE: Wearing sunglasses that BLOCK ULTRA VIOLET LIGHT, help to prevent CATARACTS. ******************************
Also if you get a SUPER WIDE post, go to the BOTTOM of the screen. Look to the left hand side and chose PRINT FRIENDLY VIEW or it's worded something like this ... on the same line as GO TO ______ section ...medical or general, etc. Carol in PA passed this along to me. I use it daily now
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! http://tinyurl.com/
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. ****************
RASH ITCHES -- use ``rubbing alcohol`` on it especially the corners good. Hubby suggested; worked great for me; rash cleared up in 2 days vs. weeks/month ***************************************
Colon problems; see www.celiac.com I discovered thru food allergy testing, I'm ALLERGIC TO: WHEAT/RYE as well as casein...cow's milk, egg whites, garlic, etc.
Lymetoo's link on Dr. C's explanation of western blot IGM & IGG ,16 band numbers and is DOUBLE spaced for easier reading! Thanks Tutu!:
from ANN-OHIO There is tons of good info at the site mentioned below,. this is the home page http://www.patientrights.com/index.html It was put together by a Michigan law firm and is one of the best I have ever seen ---------------------------------------
1. How many doctors did you have to see before being properly diagnosed? 112 responses Average number of doctors consulted before being diagnosed - 14 Answers ranged from 1- 120 different doctors
2. Have you had problems getting insurance to pay for doctors or treatment? 87 responses? Yes- 63 No- 24
3. Have you lost income because of Lyme disease? 106 responses Yes- 99 No- 7
4. How much does it cost you (average) per month for Lyme related expenses? 61 responded Average cost per month per patient- $4,472.49 Low- $500.00 High- $21,492.00
5. How many different medications do you take per day? 77 responded Average - 14 different medications per day Low- 3 High- 25 **************************
Bettyg's 4-20-06 new LLMD in Minn. Office visit summary, complete BODY lab results of 15-18 labs nationwide, all info the lab sent back about specific high/low testing, $$ costs involved, and what each test specifically involved what ... VERY DETAILED! I did this for other newbies who had NEVER had complete body testing like I did! Hoped it would give them guidance what they entail, how costly if OUT OF POCKET PAID, and which specific labs nationwide are the best for these SPECIFIC lab work.
Tick Borne Disease - Symptom A to Z Lyme Disease is systemic, it can effect the whole body. This page lists the possible symptoms.
Abdominal Pain Achiness (Generalised) Acrodermatitis Chronica Atrophicans/ ACA Alcohol - Extreme Effects Of Anorexia Anxiety Attacks Arthritis Back Pain Balance Problems Bell's Palsy Bladder Problems Blindness Blood Pressure - Raised Bone Erosion Bone Pain Bowel Problems Bradycardia - Slow Heart Beat Brain Fog Breast Discharge Breast Pain Breathlessness - Air Hunger Carpal Tunnel Syndrome Chest Pain Chills Cholesterol - Raised Choroiditis Clicking Joints Cold Feet Confusion Conjunctivitis Constipation Costochondritis / Ribcage Pain Cough (Non-Productive) Cramps Deafness / Hearing Loss Dental Pain Depression Diarrhea Difficulty Concentrating Disorientation Diverticulosis / Spastic Colon Dizziness Dyslexia Ear Pains Encephalitis/ Encephalopathy Erythema Migrans Rash Facial Pain Facial Palsy Fasciculations / Muscle Twitches Fatigue Fever Fibromyalgia Floaters Flu-Like Symptoms Fluctuations of Symptoms Foot Pain Forgetfulness Hair Loss Hallucinations Headache Hearing Loss Heart Block Heart Problems - ECG Abnormalities Heartburn Hepatitis Herxheimer Hoarseness Hyper Sensitive Hearing Hyperacusis - Sound sensitivity Inability to Concentrate Inability to Remember Words Insomnia Involuntary Jerking, Limbs and Trunk Iritis Irritable Bowel Jaw pain/ Temporomandibular joint disorder Joint Problems Joint Swelling Knee Joint Pain Libido - Loss Of Light Sensitivity Liver Problems - Raised Enzymes Malar (Facial) Rash Marked Personality Changes Memory Loss Meniere's Disease Meningitis Menstrual Irregularities Miosis - Decreased Pupil Size Mood Swings Motion Sickness Muscle Aches Muscle Spasm Myoclonic (Involuntary) Jerking Nausea Neck Pain Nerve Conduction Defects Nightmares Numbness Optic Neuropathy Palpitations Panic Attacks Paraesthesia / Abnormal Skin Sensations Paranoia Photophobia PMS - Pre-Menstrual Syndrome Psychiatric Problems Ptosis - Drooping Eyelid Rash Retinal vasculitis Reynauld's Syndrome - Cold Hands & Feet Seizure Shivering Shooting Pains Shortness of Breath Shoulder Pain Skin Sensitivity Sleep - Excessive Sleep Apnea Sleep Disturbances Sleep Inability Slurring of Speech Smell Sensitivity Sore Throats Speech - Slurred, Slow Speech Errors Spinal Disc Problems Stiff Joints Stiff Neck Swallowing Difficulty / Dysphagia Sweating (Profuse) Swollen Glands Symptom Flares - Approx 4 Weekly Tachycardia - Fast Heart Beat Tendonitis Testicular Pain Tingling of Extremities Tinnitus / Ringing in Ears TMJ - Jaw Pain / Stiffness Tongue Numbness Tongue Pain Tooth Pains Tremors / Shaking Uveitis Vasculitis - Circulation Problems Vertigo Vibration Sensitivity Visual Disturbances Vomiting Weakness or Paralysis Weight Gain Weight Loss Word Block ``````````````````````` SSDI, SSI, LTD procedures: Here is what I post for all on SSDI/SSI/LTD... I tried the link of the female MD ``template''; you are right; it's no longer good!
2 alternatives: use what I provide below as guidance since you have LYME disease and not filing for chronic fatigue.
OR go to the bad web site, click on REFRESH, and go to that site! Ask Mary, web owner, the question since she posted this on disinissues; SHE started that site! It was her close friend who okd to post her info for others. Betty Gordon
TRYING TO GET SSDI, SS DISABILITY INSURANCE BENEFITS OR LTD:
Hi! I know what you mean about memory & typing, etc....it's the pits!
I do suggest you join the FREE DISINISSUES and read thoroughly or just print it all off of the FEMALE MD with chronic fatigue, etc. she gives wonderful, detailed examples that DDS, disability reps, want to approve/deny you.
Also have you looked thru the ADULT APPROVED LIST OF IMPAIRMENTS? That's critical also!
note 1.04; look at the rest of the 14 other specific areas too....
I printed off 1-14 sections showing what brief guidelines were for each section. I used that against ALL my medical records, 3" thick!! Then I went to their DETAILED specifics for the sections that applied to my illnesses!
TIMECONSUMING....TOOK ALL 7 WEEKS from my notice of my ALJ hearing date!
So you have NOT submitted your INITIAL APP TO SS OFFICE, correct? Good, you want this to be as complete as possible so they can NOT turn you down on the 1st step as they do us all!! =============================================
What I did with an online friend was this: prepared a chart noting the specific section of 1 - 14 that my diagnosed illnesses showed the wording, dr. seen & date.
Example, 14.09 LYME disease is mentioned in but doesn't give any examples. So I showed 14.09 with my drs. name & date plus specific details about each visit where lyme symptoms were stated..
I hope you have a copy of ALL MEDICAL REPORTS...drs., xrays, all blood labs, etc. It's critical that you KEEP A COPY FOR YOURSELF! ========================================
On mine, I showed the date mailed to ALJ & LAWYER PLUS I kept a copy. Then I went to copy center nearby & copied and mailed promptly to lawyer per his request.
WHY THIS IS IMPORTANT:
if you have an ALJ hearing, request thru your local SS office to REVIEW your complete SSDI app at THEIR local office!
When you see things you submitted with your writing on, don't look at them!
Look & read only the secretative ``RFC & MFC'' done by the the in-staff DDS DRS & PSYCHOOGISTS!
You want to make copies of ALL the stuff they have & other stuff you don't have so you can use that info against them!
NOTE: I'D DO THIS DIFFERENTLY NOW!
SEND 1 COPY TO ALJ and 1 to your lawyer!
Lawyer did NOT SEND MY REPORTS TO DDS STAFF PROMPTLY;
they didn't see many things when they denied me although I had good medical info!
Examples, 2 RFC, residual function capacity done by PCP dr. of 26 yrs. & rheumatologist;
plus 2 MFC, mental function capacity, done by psychiatrist & psychologist....the 1st person was the one judge used in APPROVING my 2nd claim for severe depression/effective disorder & anxiety.
ALJ's don't like working with LYME, FIBRO, CHRONIC FATIGUE. MENTAL is on approved list of adult approved impairment list! So don't fight it, go with it! ============================================
This message is sent upon subscription, and again monthly.
There are many more links, as well as advice and "useful" messages in the Files area of the website. Go to http://groups.yahoo.com/group/Disinissues and click on Files.
The website provides compilations of several areas of interest which are commonly requested and mentioned. They reflect the collected wisdom of this group. Check them out - you just might find the information you were looking for! Take a look at Files that are not specific to your situation, because they might be helpful anyway - what works for Social Security may work for LTD claims, what applies to CFS, chronic fatigue syndrome, may apply to your medical condition.
The Welcome Message and Group Guidelines are in the Files section, if you need a refresher on how this group works.
You must register with Yahoo to use the website, but note: Be careful not to permit your address to be put into the directory when you register. Put as little as possible into your public profile. You do not need a Yahoo address to use the website. Your email address is what Yahoo calls your "alternate address."
Please let the moderators know if any links have changed.
Contact the moderators at [email protected] or for AOL subscribers: Click here
BETTY NOTE: Look at the female MD''s DETAILED BACKGROUND right below this paragraph. Print off her detailed responses as to why she could NOT do her job, and then apply that to YOUR own job as to why you no longer can do any type of sustainable work now nor in the foreseeable future! NO LONGER GOOD 5-17-06: http://www.cfids-me.org/socsec.html
************************************* An online friend of mine from disinissues web site posted this info today, so I have copied it over here.
Subject: fibro/CFS disability info [Disinissues] what does an Functional Capacity Exam entail?
Lyme, fibro, & CFS support group members who are/will be filing for SS Disability insurance benefits, please go to the web page shown below.
There were 9 pages of info I printed below area where you can order from fibro network a 70 page packet.
I too plan on including this info when I send my FINAL packet of info to chief ALJ before my June 16, 2005 hearing...my last chance! =======================================
Please read the site mentioned on: WHY DISABILITY TESTING FOR FMS IS OFTEN MISLEADING ADVICE FOR FM/CFS PATIENTS AND THEIR DISABILITY TEAM.....
Also after this article are the following articles:
WHAT COULD BE CAUSING DELAYED-PHASE FLARES?
BENNETT'S METHOD FOR ASSESSING FUNCTION IN FMS..
TECTONIC CHANGES IN DISABILITY LAW by lawyer Joshua Potter, CALIF.
MEDICALLY DETERMINABLE IMPAIRMENT REQUIREMENTS FOR CFS & FMS
DOCUMENTIONATION...VIEW IT AS AN INSURANCE POLICY
I printed this out in larger print for my eyes....9 pages! Will read it thoroughly and mark up 2nd copy to go to ALJudge for my 2nd hearing as medical evidence also.... *********************************
8-12-2006 from Connie Mc, lymenet.org
I wrote the following for my LLMD:
Guidelines for Use in Writing Letters/Reports in Support of Social Security Benefits for Patients With Tick-borne Diseases
By: Connie MS, CRC, CVE, CCM, from www.lymenet.org Disability Advocate
General principles of focus to consider when preparing this report:
1. The report/letter must have a longitudinal perspective that allows Disability Determination Services (DDS) to see the frequency, duration, and recurrence of major symptoms of tick-borne diseases. Medical records will generally show this, but a letter needs to state the general course of disability thus far, as well as the projected length of the disabling condition.
2. The report/letter must include descriptions of all treatment regimens and responses to therapy must be given; example:
oral antibiotics, and general response. Did this result in limited improvement, which necessitated the initiation of intravenous therapy?
3. The report/letter must include any significant restrictions the patient has experienced in his/her normal activities since the onset of the diseases.
Here, we are asking the physician to describe changes in lifestyle, such as: household, personal care, and social activities, as may be determined through history. Also, the physician can report any observed limitations; such as, walking, climbing, etc. as the patient functions in the exam room. A ``Incapacity Checklist'' can be helpful, and the physician can have the patient complete this for reference before the support letter is written. (A copy is at the end of this document). The patient needs to provide specific examples of limitations in function, which the doctor can document in the letter. The advocate can then obtain supporting statements from others (friends, family) to confirm what the patient has reported to the doctor.
4. The report/letter must report on any objective testing which has been done to determine the appropriate diagnosis. For example, any positive lab studies, and other supporting evidence such as positive SPECT scan results, positive findings of joint inflammation on x-rays, etc. Any testing which supports the presence of illness is acceptable. Includes the clinical examination, not just lab studies.
Once the above is established, the physician must then identify and describe the most significant and disabling symptoms frequently associated with TBD, tick-borne disease. For example:
1. Fatigue - the existence of chronic and/or recurrent debilitating tiredness, which is demonstrated by an inability to perform basic minimal tasks of daily living (ADLs).
2. Neuropsychological - the existence of forgetfulness and distractability, inability to concentrate, memory impairments, confusion, difficulty thinking, photophobia
3. Neurological - numbness and tingling, sensory impairment.
4. Pain - recurrent and chronic pain which significantly impedes the performance of ADLs and unrelieved by prescribed treatment.
Location of such pain and any objective findings utilized to diagnose the origin of such pain. This includes: chronic headaches and myalgia.
5. Sleep disorder - Any disruption of normal sleep patterns that is recurrent and does not respond to treatment.
6. Depression - Is depression primary or secondary? Is it related to the patient's reaction to the daily physical symptoms? Are there other psychiatric symptoms present which are apparent to the physician?
7. Cardiac - heart block, hypertension, and other cardiac complications.
Sample Letter
Re: DOB:
Please be advised that I have provided medical care for Ms. Blank since 5/7/2003. Ms. Blank carries a diagnosis of persistent Lyme Disease made on the basis of a number of clinical features, including: marked fatigue, chronic relapsing pain, CNS irritability, nonrestorative sleep and severe cognitive dysfunction.
This patient is disabled by incapacitating fatigue and myalgias aggravated by repetitive or sustained physical activities.
Her symptoms are consistent with her disease, which has been confirmed by positive IgM Western Blot in May of 2003. There is also evidence on examination of persistent disorganization of motor function as evidenced by peripheral nerve dysfunction.
She frequently becomes confused during discussion of treatment recommendations, and must rely on others to insure she has information she needs to proceed with recommended treatment. Ms. Blank has had marked impairment of her daily activities and finds it difficult to get out of bed on most days. She routinely requires assistance with showering and dressing. She uses a cane for ambulation. She cannot stand for more than 5 minutes to prepare meals, and must obtain assistance from others. She cannot lift or carry dishes or a gallon of milk. She cannot vacuum or mop or garden. She is unable to do laundry. She has difficulty managing her medication and must receive assistance from others to make sure she takes the recommended medications at the recommended times. She has difficulty getting in and out of a car and is unable to drive due to cognitive dysfunction.
Ms. Blank has been treated vigorously with oral antibiotics as well as supplements and other supportive care. There has been limited improvement thus far, and therapy with intravenous antibiotics is recommended for the near future.
By reason of the unpredictability of the frequency of her multiple physical symptoms, Ms. Blank has been totally and permanently disabled from engaging in, and more importantly, in sustaining any gainful employment activity, even light part-time sedentary work at home.
Ms. Blank's status has been consistent since I first began seeing her in May of 2003.
It is my opinion that she is likely to remain disabled for the foreseeable future, but, in any event, for not less than 12 consecutive months. Prognosis remains guarded and uncertain.
Sincerely,
Name: ____________________________Date: _________
Incapacity Checklist
How does your condition affect:
1. Your daily activities
2. Your ability to stand, sit or walk for a long period
3. Your ability to lift or carry weight
4. Your ability to understand, carry out, and remember instructions
5. Your ability to respond appropriately to your supervisor and coworkers
6. Other physical or psychological functional restrictions
7. Your ability to adjust to the stress of a work environment
Anyone who wants to provide this to their LLMD for use is more than welcome to do this.
I have used this same format many times and DDS and ALJs seem to be receptive to it. It includes all the information SSA is looking for to help them allow claims. Connie [ 14. August 2006, 12:00] *************************************
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Terri--I am glad you were able to write all that and get it off your chest too. Now, copy it and put in on your computer for future reference. ANd begin makng a daily journal entry about what symptoms you experienced that day and how badly. This will help you tremendously in the long run, whether you have lyme or anything else.
LYME CLINIC??? I am concerned here Terri--there is no lyme clinic in PA that I am aware of that actually treats lyme with knowledgable doctors and staff. we only wish. I first contracted lyme in PA in 1991.
There are VERY few docs that actually understand this disease. They are harrasssed by insurance co's and medical boards and we must protect them so they can continue to help us. So please go to the FIND A DOCTOR part of this discussion board and post your location and people will tell you the info you need to find a good lyme doctor.
The tests for lyme are very inaccurate and can NOT be relied upon for diagnosis. It is a clinical diagnosis that many doctors are uncomfortable making.
I can not say whether or not you have lyme, but you do have many symptoms. Your initial presentation of symptoms DOES seem more like a hormonal issue, but your most current symptoms point towards lyme.
If you continue to get the run around or if they diagnose you with something that you feel is inacurrate or you do not get relief --please come back and learn more here and let us help you find the right doctor.
Cipro makes me feel fantastic too! But remember that most antibiotics will make you feel much WORSE (if you have lyme) before you feel better.
I hope some of my info helps you find the answers you need, trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Hi Terri,
Welcome to LymeNet.
Wow. Your story does sound familiar.
I wonder how many of us are alive now because all our UTI/Bladder/Kidney infections, that eventually resulted from our Springtime "Flu," at least got some antibiotics in us.
Oh, I don't know if it was mentioned, but if you do happen to get any skin rashes, be sure to take photos of them. I guess now you have to have your face in the photo too.
Which may be tricky, depending on where the rash is located
Anyway, put those photos in with your diary of symptoms and don't let the originals ever get out of your possession.
Hope your appt. goes okay tomorrow. Maybe they will at least get you started on some antibiotics.
Either way, come back here when you can and let us know how it went, okay?
If you have Lyme, sounds like you have a chance to knock it out early on. That's what we like to see! Please don't let anyone tomorrow at that clinic discourage you from at least getting an opinion from an LLMD.
I believe that she is reffering to a place call " tick Borne Diseases" in Phillipsburg...
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Good luck at the clinic. If they say anything that gets you depressed or discouraged, just voice over "blah!blah!blah!" in your head & come back here.
I've found that there are some really terrific, brilliant, highly-knowledgable people here with great senses of humor. They really help pick you up off the floor when you're feeling trampled. (Thanks all!! )
If you don't feel that you're getting the help you need, you should definitely come back and post in the "seeking a doctor" section for LLMD referrals. This was the best thing I've ever done for myself.
However, you would need to enable the pm for people to be able to send them to you, as they can not post LLMD info on the boards.
Best wishes in your quest for wellness! Ali
PS - Don't you old-timers let that blurb of mine go to your heads! HA!Ha! Thanks again!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
"I used nail polish remover instead of my facial toner."
Terri,
I did this same thing the other day except vice-versa. I was wondering why it wasn't taking off the polish.
Welcome to the board, tic
-------------------- Adversity is the diamond dust heaven polishes it's jewels with. � Robert Leighton
Daily world-wide prayers welcome for the Lyme Community - every day at 6:00 p.m. Pacific Time and 9:00 p.m. Eastern Time � all faiths welcome! Posts: 309 | From S.E. Mass | Registered: Apr 2006
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posted
Thank you to all who replied I do appreciate all feed back. It took a while to reply because i was just too tired to fight with a messed up computer. i'm using my son's pc now.
I went to the tick borne disease ctr. in Phillipsburg, N.J.. I was highly disappointed.
My interview was cut short because the md was not there and the asst. was distracted by the extra patient load. Somewhere in the middle of my exam / interview she was called out of the room for about 10 min. When she returned she could not find her stethoscope which led to a longer frustration for me. Cut short they did do some bloodwork there and scheduled my follow up for Oct.
I guess because I'm so frustrated already the waiting seems forever. I felt the assistant did not take the appropriate time. I had my journal and my list of symptoms, but she wasn't interested in it. She did copy all my labs and mri results, etc.
On thur. morning I went back to my pcp to speak with another md there about what's plaguing me.I felt relief in that she took alot of time to discuss everything with me including my visit to the clinic. She was not pleased of course, she said she would not send her mother there instead she would have me see a dr. R in the need arises. She ran more bloodwork other than what they ran at the clinic. She said she will get to the bottom of it. My revisit was also scheduled in october.
On friday morning @ 3am i woke up with extreme pain in my throat and ear. Hmmmmmmmm why couldn't this have happened thurs. morn. !!!
Took the day off and went back to pcp office. She discovered an ear infection as well as throat infection. On zithro 250 mg. for 6 days. Some of my bloodwork did come back everything within normal excapt for hemoglobin & neurophyls. I was told hemo high because I smoke, ok i can deal with that. Neuros high because of body fighting infection.
My neurophyls were high back in april and july too but i guess because nothing was seen it didn't matter?
Anywho, It's now monday labor day and I still feel like crap. I hate waiting. I haven't the patience anymore. I was put on lexapro to help ease my worries and perhaps it will help with the cognitive stuff according to md..
I know I'm on the right track but today the track seems to be all uphill and every step i take is a struggle. I'm hanging on because I have too much to be thankful for to just give up.
Thanks again to all who replied. Please note i still do not have pm activated because i'm having a bit of computer trouble as soon as it's fixed i'll open the window for a better view. .
I'll keep posting updates.
Terri
Posts: 4 | From Pennsylvania | Registered: Aug 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Terri, Get thee to an LLMD ASAP. quit goofing with the ducks. This is a symptom based disease, tests are crap. Dont waste a cent on tests you dont have to. Get going on 'good' treatment and you will be on yur way back(but a long road,sometimes). Post on 'seeking a LLMD ' and get you a real appointment. Those ducks will kill ya before they fix ya, PERIOD!!!!
Get going, today is the first day of your recovery--, --just don-- said so!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Quinolones (like Cipro) don't do anything for Lyme. Might have been knocking something else at the time. And I'd underscore the recommendation that the only useful tests are the qRIBb from www.Bowen.org or the tests from Igenix. I have a dramatic case of late Lyme (17 yrs, diagnosed this June), with totally neg ELISA and WB but strongly pos qRIBb and clearcut response to treatment, confirming diagnosis. Non LLMDs usually only do the E and WB because that's what the CDC says to do but a huge percentage of late Lymies don't make the antibodies they're measuring. You 'could' ask your doc to order the kit from Bowen Labs and just do it, but it'll set you back $250 + overnight to Fla. Best bucks I ever spent. ymmv......
jon
-------------------- ret ER MD (25yrs), lyme 19yr DX 6/06, guitarslinger www.LifePathGuide.com Posts: 28 | From Willits, California | Registered: Sep 2006
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hi Terri,
I also live in PA...what part are you in? Im right outside of philly.
If i were you I wouldnt waste time at the tick born place, they didnt have time to spend with you, so in my opinion they dont have time to 'fix' you either.
Goto seeking dr and post for a LLMD, and go to one or two that have atleast 3 satisfied patients.
This time last year I wasted time with ducks...and im now disabled because of this illness.
How high are your neurophyls? Mine also come back high.
hang in there.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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