posted
I am writing for my daughter (early 40's). She was just diagnosed (again) with Lymes and is very sick, stiff neck, large red oval under her chin. She is having violent headaches, and is severely sensitive to light. She has had seizures in the past, but is not now on med's and hopefully this won't throw her into one. She is now entirely responsible for two children, 15 and 17; and a 62 yearold husband who is in later stages of a form of Alzheimer's, FTD in Assisted Living. She is on "doxacycline" and having a lot of trouble keeping the med's down. Does anyone know the best hospital in the Baltimore, Md. area for her to go to for a 2nd opinion. She has horrible allergies to meds and if not treated carefully, another bout with Stephens/Johnson's could end her life.
Posts: 3 | From Baltimore/Harford Co. area, MD. | Registered: Jun 2006
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posted
I would not recommend ANY hospital for treatment of Lyme disease or a second opinion. MAYBE someone in your area will have an idea for you if there is a hospital with common sense near you. [doubtful!]
Your daughter needs an LLMD immediately. That's a Lyme Literate MD. You can post in Seeking a Doctor here for names.
There are many other meds she could try besides doxy. It is imperative that she continue treatment for AT LEAST 6 wks to make sure this does not come back on her later.
Then she will be in a world of hurt, trust me. I wonder if you could cut and paste your story and post it again over in Medical??
You will get many more responses and alot more help over there. Most people don't wander over here to General very often.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Hi there Duck Farmer..I am from just over the line. And there are no hospitals to my knowledge that are good with lyme in Baltimore..
Only possible one may be St. Josephs, near Towson. Just because they are more independent, I think and I had a friend whose dad received some help there.
If you want to pee away some money, go to Johns Hopkins..We spent over $700, to get no help..Were told to quadruple the psych med dose and they did not think it was lyme disease..
You are in the #1 county in MD in regards to reportable cases of Lyme Disease..And next door, for us ,York Co is tied at #3 in PA, with it now being the #1 State in the Nation.. So your are in a hotbed of lyme and other tick borne diseases.
THere is a support group in the area..You can send me a pm for info..
I would also try to stop the doxy for awhile and contact the DR..My daughter also is miserable on doxy..also many have herxheimer reactions to the antibiotics and the die off of the bacteria..It can be horrible..I recommend she get in touch with the Dr to evaluate the cause.
Also take a photo of the rash..It can come in handy later..
TRy to do some reserch on here by reading the newbies links..It is so full of all types of info..
Good luck...
Posts: 2360 | From SE PA | Registered: Mar 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi duckfarmer
I am so sorry to hear about your daughter. It sounds like she has her hands full.
I have not heard of anyone having good treatment at local hospital for lyme disease.
I second lymetoo opinion that she needs to find a lyme literate doctor as soon as possible.
Lyme disease is a very complicated disease to treat. With the tick bite there are also many other disease's she could have gotton too, called co-infections. There are different meds for these as well.
You can find a doctor in seeking a doctor section.
Also read the articles in the newbie section, It can tell you alot more than I can.
Good luck and hope she can find someone to help her and feel better soon.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Yes, be sure to take a picture of the rash, with a coin and/or a date from a newspaper to prove the size and time for future reference.
Some drs like to deny that a rash ever existed. Many of us never had a rash, and an EM rash is disgnostic of Lyme in itself.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
You have been given good advice; doxy made me sick even with food but there are other abx she can use.
It's a nightmare, I know, but keep asking questions here. No question will be disregarded.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
I am very sorry your daughter is so sick. But you have come to the right place for help.
I wouldn't trust any hospital as others have said.
Get to a LLMD asap.
I would also get her husband tested as well. If she has had lyme in the past that is what he may be suffering from as well. Lyme is commonly misdiagnosed as Alzheimer's. I know I have every symptom on the list.
Was her Steven-Johnson from a Quinolone?
And yes take pics of the rash.
Lyme can cause the seizures as well.
Your daughter is lucky to have you looking out for her family.
Lyme x 9
Posts: 399 | From Texas | Registered: Apr 2005
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posted
Lyme X 9...I thought the same thing about the Alzheimer's. I hope he is checked for Lyme ASAP!
and duckfarmer.... Insist on testing thru www.igenex.com !! It's the best lab for lyme testing.
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Carol B
Unregistered
posted
Hey DuckFarmer-I'm from the Balto area I will pm you with the LLMD I go to. I am not familiar with the other Stephen/Johnson illness. I know that I am also very sensitive to a lot of meds-and my LLMD has me on Ceftin which I seem to be tolerating just fine. Carol ps I was also diagnosed with seizures and take Keppra an anticonvulsant which has helped a lot.
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bettyg
Unregistered
posted
duckfarmer, my heart goes out to you with your daughter's lyme and son-in-law late stage Alzheimer's disease.
I'll copy/paste some newbie info here. Be sure to read my notes aout EYE SENSITIVITY & NOIR SUNGLASSES; they really help my eyes!
You didn't say if she was working or not so I'll copy my SSDI, ss disability insurance benefits info here too. Best wishes to you ALL.
Call for Igenex's prices; info on web site. Print out their PDF form required for the western blot igm/igg testing. PREPAID unless patient is on medicare. $180 now... Write on IGX form you want results FAXED, mail paper copy to MD too. MD must sign, put his diagnosis code on & medicare if applicable.
Welcome to this 24/7 LYME support group board!
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. 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.
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Burrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol''s newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl''s extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-10 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn''t cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated YES, I have what you have! Are you on doxy too? That made my extreme eyes
200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board.
Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
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.
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
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
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! 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 reocrds, 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!
============================================ IF YOU ARE TRYING TO GET SS DISABILITY INSURANCE BENEFITS This message is sent upon subscription, and again monthly. Please let the moderators know if any of the links have changed.
There are many more links, as well as advice, in the "useful" messages in the Files area of the website. Go to http://groups.yahoo.com/group/Disinissues and click on Files.
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
These links are a compilation 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 may apply to your medical condition.
The Welcome Message and Group Guidelines are also in Files, 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."
Contact the moderators at [email protected] or for AOL subscribers: Click here
To unsubscribe from this group, send an email to: [email protected] Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service. *************************************
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.... bettyg, Iowa
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posted
Hi, I am the daughter recently diagnosed with Lymes. First, my husband was tested many times for Lymes and was diagnosed with Pick's Disease 4 years ago. A whole other set of problems...but
This started with a sensitive line on my next then became red and a day later larger with red ring, white ring, red ring (the size of a large pear). While at work on Mon. I started to feel a migraine coming on and treated that...then in and out of the bathroom, sensitive to light, sweating, nausea, dry mouth, and my brain just wasn't screwed on tight. I felt as bad as I did when I almost died from a drug reaction (Stevens Johnson Syndrome x3). I went home and had my daughter drive me to the hospital. The doc said it was "A classic case of lyme's" and started me on the doxycycline (200mg).
Yesterday I was ready to go back to the hospital but decided not to as my daughter was leaving for Europe this am...but I can't seem to be up for more than 10 min. and I'm tired out. My headache keeps coming back, and my stomach isn't appreciating what I put into it.
How long has this lasted for some of you? I'm almost afraid to ask. I'm supposed to go to work tomorrow and I just can't see that happening. Thanks for your help donna in Harford Co.
Posts: 3 | From Baltimore/Harford Co. area, MD. | Registered: Jun 2006
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Welcome Duckfarmer,
I am much better after a yr or so of treatment.
I was a mess when I first started my antibiotics with a big herximer reaction.
So the terrible symptoms (flare) can be a sign the treatment is working.
My kids have lyme and are also steadily improving.
I feel for ya dealing with this and teens. and your husband. God bless you. You can get better.
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Donna, if you continue to feel so rough on doxy, there are other meds that may be ok to take..Just make sure you get some very good probiotics.
Acidophilis pearls, live culture yogurt and other things that will replace the essential gut flora so you can hold down the potential yeast issues.
David's, the health food store, at Rock Spring by Mc D's is a good source..
Betty has given you way too much info to get thru soon..so cut to Dr Barrascano's guidelines and branch out from there.
The local ticks have a bad cocktail that they are passing along.. Along with lyme disease some also have the following co-infections: Bartonella(including psych problems), Babesosis and one member of our support group has recently tested positive for Rocky Mt. Spotted Fever.
Doxy will not take care of everything. And be careful of being in the sun with it..It will make you very sun sensitive. You will be very easily burned in just a few minutes.
I have heard some of the research of Dr. Mc Donald. He has studied altzheimer brains.. 11 of 13 also when stained showed the lyme bacteria..
My daughter's lyme doctor is positive that this bacteria is the contributing factor to many other chronic and life threatening diseases.
There is no instant cure for these diseases..Well infectious disease Docs say 3 weeks of meds or one super pill..But do not believe them. But you becoming educated and your own advocate will be the important piece of this puzzle to better health.
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
This does sound like lyme but not Steven johnsons - i had that from clindamycin last year - and my throat closed after the rash went from my stomach down my legs - and can even be inside.
Please find an llmd - it definitely can last a while but sounds like you are catching it quickly so you may be ok sooner than alot of us.
I wish you much luck.
Posts: 799 | From home | Registered: Sep 2004
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posted
Thank you all for all your replies and good info. I am going to back out and let Donna speak for herself. I am fortunate not to have had this terrible problem and she is feeling a bit better now and can better discuss her problems than I second hand. Thanks, you are a great group. I will forward this site to my son-in-law in Pittsburgh who hase been dealing with LD for several years and still has bouts of pain and misery. Betty
Posts: 3 | From Baltimore/Harford Co. area, MD. | Registered: Jun 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Donna,
Your main question seemed to be how long people have been sick:
When I was first diagnosed last June, I would have rated my overall health at about 18%.
Now, after a year of antibiotics, I'm up to about 65 to 70%...and continuing to slowly improve.
I have to also say that I got much worse before I started to get better, once I started taking high level doses of antibiotics.
I'd also recommend seeing a Lyme literate medical doctor and not someone affiliated with any of the hospitals.
Hope this helps!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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