Id like to ask for your opinions on short term abx effects on neuro-lyme please?
I have an appt with a LLMD at the end of October, and have been reading all I can on the subject.
I was bitten by a tick 15 years ago, that was engorged and still embedded on my spine. Shortly after, I had a saucer shaped rash, identical to those I see in pictures of EM.
About a couple of weeks later I had mild flu which I didnt connect, and about 4-5 months later this kind of arthritis/muscle aching illness that left me hardly able to move about. This lasted for 6 months I think, and then subsided.
After that, I never felt well, began with constant bladder infections, for several years, then stomach problems, IBS etc,
5 years ago it moved into my eyes, and I have had constant problems with photophobia, severe pain, flashing lights,floaters and other stuff.
The last couple of years, Ive also had real problems with my teeth and gums, when there shouldnt be because I am very careful with dental hygiene.
The thing is, for all these infections, Ive been prescribed various antibiotics over the years - at a minimum of 3 x 7 day courses per year.(Various types)All the infections cleared up, and then kept coming back.
I have just finished another 7 day course of Amoxy, the third in three months, for the teeth, and am pleased because my eye problems have been lessening with each course taken, although the abcesses still come back.
I can now read the puter without shades, and my stomach problems are reduced, but now its gone into my legs and muscles, and balls of feet!
I read somewhere that when attacked by abx, the Lyme encysts. Would anyone be able to give an opinion on what these short bursts of abx over the years would have done to the course of the Lyme please? And also, any ideas on what would help in the meantime?
Thank you so much,
April.
Posts: 15 | From Europe | Registered: Sep 2006
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posted
Hi Cave, Thanks very much for your reply. I thought maybe that would be the case. When I read about encysting it made me think that maybe it was the Lyme morphing and ongoing.
I only really found out about Lyme earlier this year, so its been a real learning curve to discover all this.To think I used to believe all those abx caused my problems!
Ive got an appt with a good LLMD in October and will go with whatever treatment he suggests.
Thanks for the other info too. Its so helpful to have found this site. April.
Posts: 15 | From Europe | Registered: Sep 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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bettyg
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posted
Welcome April to our site of 24/7 education & SUPPORT!
April please go to MY PROFILE and change it to ALLOW PRIVATE MESSAGES, pm, so folks can send you things privately ok.
I would have sent my newbie links/advise to you by PM; but that is not an option. I'll include them here MINUS all the pages on disability applying to American process to get $$ benefits.
ANYONE READING HERE, PLEASE HIT THE "END" KEY NOW TO TAKE YOU TO OTHER REPSPONSE AFTER MY MANY PAGES HERE FOR APRIL !
Welcome to www.lymenet.org ; this 24/7 LYME support/educational group board! Updated 9-9-06
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 folder, 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.
Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
The below tests were done for ME; you MAY NOT NEED them all ok! :
western blot IGM & IGG, this is MANDATORY for you which costs $190 total for 2 tests done; ******************************************************* OPTIONAL ONES ARE:
co-infection panel for YOUR AREA OF COUNTRY; PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
Also, call 1-800.832.3200 for CURRENT PRICES! They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
What I gave you was 2-06 prices unless they have/will be going up again!
You need to DOWNLOAD IGENEX's required form.
MD must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test. Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg
When you get your results, please post them in MEDICAL; ONLY the POSITIVE & IND ones ....not the negative ones!
Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers. They are listed on another page in my links 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. 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.
MS AND LYME: The DVD about lyme and MS at www.unh-lyme.org may be of interest to you. It's $15, and proceeds go to support Dr. S's research. Timaca
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 PRINTER FRIENDLY VIEW on the same line as HOP 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!:
Tincup's explanation of Camp A and B, Steere vs. Burrascano, on short-term antibiotics vs. long-term
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, FINAL RESULTS shown below! 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.
posted
Thank you for the welcome everyone, and the bedtime reading - thats fantastic and Im sure that will keep me quiet for a while.
PS. Have altered my PM setting Bettyg, sorry my brain's not working on all cylinders these days April
Posts: 15 | From Europe | Registered: Sep 2006
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April
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