posted
I'm being tested for Lyme for the second time in 2 mths. Understanding this will probably be a clinical diagnosis my md wants to start me on abx for a trial period of 21 days just to see how it goes. She is giving me a choice between amoxicillin or doxycycline. So my questions are which one to start on? (I want to make sure it's strong enough since I have cognitive issues)what kind of dose? and is 21 days long enough for a trial? Would a positve test result show after abx treatment? Thank you in advance.
Posts: 4 | From Pennsylvania | Registered: Aug 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I can only post my experience.
I was on amoxicillin following 4 IM injections for a urine challenge for lyme. It seemed to do little.
Later on I was put on 200 mg doxycycline. I was also on IV rocephin at the time. When I switched LLMDs, my new LLMD upped my doxy to 300 mg. 10-12 days later I had a significant herx. (My herx's always come 10-12 days after a significant antibiotic dose.)
It was interesting to me that 200 mg doxy did not give me a herx, but 300 mg did. I think doxy is a bacteriostatic drug, but when given in higher doses it acts as a bactericidal drug...thus inducing a herx.
I think doxy also can kill ricketsia infections, so is often used in fighting tick borne diseases.
I guess if it were me, I'd choose doxy over amoxicillin (watch the sun exposure, and watch your tummy--doxy upsets some people's tummies).
And I'd hope for a higher dose (300 mg) over 200mg.
Then see if a herx occurs. My herxes are significant. There is not mistaking when one comes.
Good luck....Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Some people have done well with amox - I was not one of them - I lost a lot of ground on it. I alwasy have done well with doxy. I have a 10 day herx every time.
Posts: 582 | From milwaukee wi | Registered: May 2005
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bettyg
Unregistered
posted
Terri, welcome! I was on pulsed abx for 20 months:
3 days on doxy 200 mg twice daily for 3 days; 2 days off; 3 days on biaxin 500 mg twice daily for 3 days; 2 days off; then started doxy again
FOR ANYONE READING THIS, PLEASE HIT "END" KEY NOW, I'M ATTACHING MY NEWBIE LINKS/ADVISE; 15 PAGES since Terri chose not to accept private messages.
Welcome to this 24/7 LYME support/educational group board! Updated 8-25-06
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.
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 ---------------------------------------
Tincup posted March 8, 2005, Lyme Disease Survey Responses, February 27, 2005 - March 9, 2005
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
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
For appropriate dosages and treatment recommendations, read this and take it to your doctor.
Increasingly, clinicians recommend that certain drugs used for Lyme disease be given at higher daily doses: for example, 3,000-6,000 mg of amoxicillin, 300-400 mg doxycycline, and 500-600 mg of azithromycin. Some clinicians prescribe antibiotics using blood levels to guide higher doses. Close monitoring of complete blood counts and chemistries are also required with this approach.
With higher doses, there may be an increase in adverse events in general and gastrointestinal problems in particular. Acidophilus has reportedly reduced the incidence of Clostridium difficile colitis and non-C. difficile antibiotic-related diarrhea.
Serious adverse effects of antibiotics, however, were less common than previous estimates. In a recent clinical trial of chronic Lyme disease, the overall serious adverse event rate was 3% after three months of antibiotics, including 1 month of intravenous antibiotics. Clinicians who have experience with higher dose antibiotic therapy must balance the benefit of higher drug levels achieved with this therapy against the modest risk of gastrointestinal and other side effects.
Duration of Therapy
Because of the disappointing long-term outcome with shorter courses of antibiotics, the practice of stopping antibiotics to allow for a delayed recovery is no longer recommended for patients with persistent, recurrent, and refractory Lyme disease. Reports show failure rates of 30-62% within 3 years of short-course treatment using antibiotics thought to be effective for Lyme disease. Conversely for neurologic complications of Lyme disease, doubling the length of intravenous ceftriaxone treatment from 2 to 4 weeks improved the success rate from 66 to 80%.
The management of chronic Lyme disease must be individualized, since patients will vary according to severity of presentation and response to previous treatment.
Concurrent risk factors (i.e., coinfections, previous treatment failures, frequent relapses, neurologic involvement, or previous use of corticosteroids) or evidence of unusually severe Lyme disease should lead to the initiation of prolonged and/or intravenous antibiotic treatment. Physicians should always assess the patient's response to treatment before deciding on appropriate duration of therapy (i.e., weeks versus months).
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