posted
I got diagnosed with Lyme Disease almost 2 weeks ago. I got bit by a tick about 5 weeks ago so I caught the disease in it's early stage. I'm taking Doxycycl hyc 100mg currently but my 14 day treatment will be done in two days. I still only feel about 65% better so I am wondering if 2 weeks on antibiotics is enough or if I should stay on antibiotics a little longer. Is 14 days enough to get rid of Lyme in the early stage even if you still have symptoms after you are done with the meds? Also some people told me that Lyme stays in your system dormant (like Mono) for years. Is this true?
I recently got laid off and lost my heath insurance so getting diagnosed with Lyme Disease has been rough since I have to pay out of pocket for all tests and medications (and I can't afford anymore medical bills since I already owe the ER $500+). I would hate to finish my 14 day treatment only to find out that I never got rid of it. I went to the ER at a local hospital when I discovered the rash and my unexplained flu (I am really healthy and never get sick) like symptoms so I'm not sure if I should call them to get another prescription or if I should just wait to see how I feel in a couple of weeks and hope that the Lyme Disease got cured. Any suggestions for what I should do?
My symptoms were: Headache severe over left temple and left eye. Pressure in Head Stiff or painful neck Jaw pain or stiffness clearing throat a lot Double or blurry vision Pain in eyes Decreased hearing in one or both ears, plugged ears Upset stomach (nausea or pain) Bone pain, joint pain or swelling Stiffness of joints, back, neck, Muscle pain or cramps Night sweats or unexplained chills Tremors or unexplained shaking Fatigue, Chronic Fatigue Syndrome, Weakness, Pressure in the head Poor balance, dizziness, difficulty walking Lightheadedness, wooziness INTENSE night sweats, and waking up every hour, unable to stay asleep because of sweats/chills and the inability to get comfortable because of the pain in your body. Disorientation (getting or feeling lost) Over-emotional reactions, crying easily Too much sleep, or insomnia Difficulty falling or staying asleep Confusion, difficulty in thinking Difficulty with concentration or reading Extreme fatigue Unexplained fevers (high or low grade) Symptoms seem to change, come and go Pain migrates (moves) to different body parts
As of right now I still get moderate to severe pain at different locations of my body. The pain tends to move around daily. For instance yesterday I had back and shoulder pain and the day before I had severe arm, leg and joint pain. Right now I still have joint pain in my fingers and toes and I have a constant mild headache daily. I still have no energy and I get fatigued very easily. Just walking around the mall for an hour poops me out. I'm only 30 but I feel like I'm 70 right now. It took about 5 days on the meds until I started to feel like I was getting better. Now I have 2 days left and I still have very low energy and and still have to take tylenol every 6 hours to deal with my head/body aches.
Thanks!
Posts: 4 | From Rhode Island | Registered: Sep 2006
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posted
The pain is moving around due to the spirokhetes seeking protection from the doxy.
Your story of being laid off and without health insurance is very close to my own situation in '04.
I paid out cash to llmd just outside of CT. I explained situation to doc. Please send me private message with your location in relation to Providence. I'm originally from the area and know some nurses that may be able to assist you.
Doxy is a great abx for crossing blood/brain barrier and attacking the ketes, but you really need to continue for another 4-6 weeks. 14 days isn't going to cut it.
You don't want to play with a great abx like doxy and then relapse and take it up again. Better to have long term healing from it and not become resistant to it with treatment one month then 6 months later, then maybe 4 mos later. Can't play with a powerful one like that... too important.
Find a doc to prescribe another 4 weeks.
-------------------- Lymester Posts: 519 | From CT | Registered: Jun 2004
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Carol B
Unregistered
posted
also 100 mg is too low of a dose to do much good-so your treatment so far is too little for too short of a time if you want to be effective against lyme.
Get to an LLMD- you may have to pay out of pocket-and it is expensive-but so far your level of treatment is like spitting on a forest fire to put it out.
Undertreated initially- and the consequences go on and on. Carol
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
When you call for an LLMD appt make sure you tell them you were VERY recently bitten. Getting treatment ASAP can make a huge diffeence in the outcome. Really only one chance at a cure. DO NOT WAIT AND SEE what happens unless you wanna be sick for a very long time.
If this response seems excessive over the top that is good!!! Most docs including the "good" docs and Infectious disease docs really have no idea what to do. Right now you do not have time to read and learn about the Lyme controversy. Get to an LLMD now!!..... unless you wanna hang out here with those of us who did "wait and see" I suggest very quick (like yesterday) aggresive treatment. Do not blow your one chance.
What you need to do:
1. Click on "my profile" right below "post new topic" on the top of this page.
Click on "view/update", scroll down and enable private messaging. This is they way others from this bord can contact you with Doctor's names. We do not post doctor names on the open board. More on that later.
Do not call around and ask if such and such a doctor treats lyme. Your chances of getting someone who really knows what they are doing is almost non-existent.
Go to a LLMD recommended by one or several members from this borad. Get doctor names, call the office and remember to tell them you have a VERY recent infection and a POSITIVE LYME TEST. This is very important. You cannot wait for an appointment!
3. Even though you don't have insurance you need to do whatever is necesary to get in to an LLMD. Going in to debt now will save you years of pain and suffering.
I know this sounds crazy but it is true. If you don't knock this out now, your debt will be way more tan you can imagine. I have not worked in 3 years because of Lyme. "Wait and See" ruined my life as I knew it. Mnay have lost thier houses and a lifetime of savings.
The debt you will incur to knock this out is far less than what you will incur if you wait. You just have to trust me on this. I have nothing to gain here .......... but you do.
4. Make sure your LLMD will address co-infections. When you call to make the appt., ask if they treat co-infetions based on symptoms. You really want someone that will do that.
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
100mg in nothing. If that is all your doctor is doing, your relatively recent Lyme will likely become chronic. 5 weeks is actually long enough to need considerable treatment as it likely is already in the brain, nervous system, etc. in that time. I would find a doctor that is skilled in treating Lyme Disease so that you don't have to deal with this for years to come....
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I can only repeat the essential things that others have already said:
100 mg/doxy/day is not enough
Two weeks is not enough
Most importantly -- do not miss your opportunity right now to get effective early treatment with a lyme literate doc! You do not want to be a member of this late-stage club.
Posts: 2557 | From home | Registered: Aug 2006
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bettyg
Unregistered
posted
hi cat girl, and welcome to the board!
I agree 100% with all the above; YOU NEED TO INVEST IN YOUR HEALTH NOW NO MATTER WHAT IT COSTS YOU!
You want to have a productive QUALITY LIFE; not like the rest of us with chronic lyme of DECADES! Now's your chance; grab it & go PROMPTLY.
To anyone reading this besides cat girl, hit the END key now as I'm attaching my 16 pages of newbie links/advise for her.
Welcome to this 24/7 LYME support/educational group board! Updated 9-3-06
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!
From HUMANBEING, Here is a link to help people get access to medication they can't afford...good information... http://www.needymeds.com/
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] ************************************* Bettyg how this gets you started on the road to RECOVERY!
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Catgirl
You Deffintally sound like you have symptoms of Lyme and Most Likely Babesia Also-- (Babs is co-infction that you get from same tick bite)
Babesia(Babs) causes the Night Sweats-stiff neck joint cracking stiffness- ear ringing pain that migrates-insomenia-
Doxicycline(Doxi) is very good but you are Not taking near enough doxi to kill off these germs-
400 to 600mg aday is recomended dose Lower dose dose you little good--
Time is not on your side -- each day is very important-- get more doxi and take it--
I am sending you a private message so look for flashing envlope at top of the page-- --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Catgirl-- you need to enable Private Message option on this site so that you can get PMs
Its very Important to have this option- --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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quote:Originally posted by SForsgren: 100mg is nothing. If that is all your doctor is doing, your relatively recent Lyme will likely become chronic. 5 weeks is actually long enough to need considerable treatment as it likely is already in the brain, nervous system, etc. in that time. I would find a doctor that is skilled in treating Lyme Disease so that you don't have to deal with this for years to come....
Absolutely correct!! Please find a dr who will at least give you 400mg per day for 6 wks so you can nip this in the bud!!
And yes, it sounds as though you may also have babesia. Find an LLMD as soon as possible!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I enabled the private message feature. Thanks for all your help. I guess I need to suck up and pay/charge on credit card in order to see a Lyme doctor. I woke up this morning with severe finger joint pain and tylenol is not helping. This is when I wish I knew someone with pain killers. This is getting unbearable. It's hard for me even to type this and I feel like all my friends think I'm nuts and pathetic since none of them realize how painful this sickness is.
Posts: 4 | From Rhode Island | Registered: Sep 2006
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posted
Everyone, Im a newbie also and you all got my interest peaked with your advice.
I caught my lyme within 5 weeks also(early may of this year), but i was quickly given 100mg of doxy twice a day(200mg)and im still on that since the middle of June.
Should i tell my doc to up it to 400mg a day? My presicription runs out this week and i have anew visit coming.
Have i missed the boat so to speak with not taking enough doxy? Man im really scared now.
Posts: 42 | From Pennsylvania | Registered: Jul 2006
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posted
short answer - NO! take it for longer until all symptoms are gone. last year when i had it i took it for three months and was in a very similar situation/stage as you. this year, got it again and took one month but am waiting to see if symptoms show up again.
Posts: 144 | From Connecticut | Registered: Sep 2006
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Carol B
Unregistered
posted
100 mg Doxy 2 X daily is for sissies who don't have lyme. You must be going to a well intentioned but misinformed DUCK.
posted
When i go back in to his office, im gonna try and convince him to up the presciption, but if he refuses i guess i will have to look for antohter doctor who will up it. I still have hope that i caught it early enough to get rid of it, but time is slipping away here.
Posts: 42 | From Pennsylvania | Registered: Jul 2006
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posted
Groovy2, I didnt mention that i am also taking: Borrelia remedy, burbur, samento, cumanda, chrollella, and a bunch of herbs. I also have been completely off of sugar since April, before i even got the lyme. My diet is what is called for concerning lyme. I only drink water. Could all this combined with 200mg of doxy do it?
I had an appointment with my doc this week but he had to leave town and wont be back until the 18th, but he renewed my prescription of doxy which im to pick up tomorrow. I think instead of taking 2 pills a day im going to take 4 and tell him when he gets back. I hope that dont tick him off (no pun intended).
This week is my 4th week in the cycle and i am noticing the symptoms arent as intense as they usually are. Could it be that im killing this vile stuff off?
Posts: 42 | From Pennsylvania | Registered: Jul 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Here's some tips on doxy. hope it helps:
Make sure to take your doxy with food & at least 8 0z of water.
Whatever you do don't lay down for 2 hours after you take each dose. It can cause gatric refluz & burn your throat.
I used to prop up with pillows in bed or on the couch when I got too tired to sit up
Stay out of the sun. You can burn bad on doxy.
And also make sure to take lots of good quality pro-biotics spaced at least 2 hours away from the time you take your doxy.
If you can get your blood levels checked.
Take care
make sure to talk over everything first with your LLMD
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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