What treatments have you undergone to treat late stage Lyme? What were the dosages? How long did it take before you started to feel a noticeable difference in your symptoms? How long did it take until you felt back to yourself? How long did you suffer from Lyme symptoms?
My doctor has prescribed doxycline 100 mg twice/day. I'm wondering if this will be enough to make a noticeable difference in my symptoms so that we can diagnose as Lyme (if it truly is Lyme).
Background/Symptoms: For the past year, I have experienced severe joint pain (knees, ankles, elbows, shoulders, hips), neck/upper back pain, muscle weakness, joint popping, fatigue, and other symptoms.
I recently received Western Blot IGG results and had positive reactions for 41KD, 23KD, and 66KD. I have not been diagnosed and am now pursuing Lyme Disease as a possibility.
Posts: 6 | From Washington DC | Registered: Jul 2010
| IP: Logged |
posted
Hi, I am in late stage Lyme, Unable to get treatment. Just went through horrific in hosp. stay. it was facial in the triangle of death what area is called. It seems to always be something in past yrs. or so. sigh
Do not have any words of wisdom besides keeping sense of humor,laugh much as poss. I have a laugh list when I am down read. Take Care, Good luck, that`s what we need tad of. Hugggggsss,Kerry
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- chrispoj,
Sorry. Your doctor is not educated about lyme. That treatment is not at all enough. It's very complex. For further assessment and advice, you will need an ILADS-educated lyme literate MD (LLMD).
You also need to be assessed for other tick-borne infections. Lyme rarely travels alone.
Kerryblue,
If you can't get to a LLMD, there are other things you can do. Attitude helps but it will not cure one of the most dangerous infections known to man. Find a good complementary protocol to at least cover some of the bases. It needs to be lyme-specific.
BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST
=============================
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
The Dr. B protocol mentioned above is what is required, though many, myself included, have used alternative protocols as well.
Typically various combinations of meds are used. Doxy is good if you catch it right after the bite, but that dosage would still be too low.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Yes, your doxy dosage is way too low. You are supposed to be on 300-600 mg a day. If you are not extremely small (a child) then 400mg or more. The next thing the doctor you are currently seeing will try to do is remove you from abx after a few weeks pronouncing you cured. Then all of your troubles have just begun.
Take everyone's good advice and get to an LLMD as soon as possible. It is a hard struggle to get completely well after this illness has entrenched itself in your body. There are co-infections that you probably have not even thought about yet, that will surface at some point and need to be addressed - the sooner, the better. You need someone experienced with the cocktails of abx that attack all the infections present in all their different forms.
Hope you find a good doctor.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Higher dose of antibiotics - two months symptoms free before you stop antibiotics. Thats what I was told.
Feel better soon.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
| IP: Logged |
posted
Hi...1st let me rpay to please get to an LLMD asap. Your dr is uninformed, as are most. Im in the tertiary (late stage) stage as well. I cant see an LLMD so ill just tell you what ive done so far. I DRASTICALLY altered my diet...NO sugar and low carbs. Im doing this per dr b's dietary guidelines. The only fruit i eat are grapefruits lemons and limes. I drink lemon water all day. Take detox baths. Light exercise. And i added supplements. These changes have made a HUGE difference in my sx. I still get them but NOTHING like they were. And last 3 days as opposed to 3 weeks. Im having to treat the natural way in the absence of an LLMD. But please get to an LLMD. It will make a difference. Good luck!
Posts: 624 | From Oklahoma | Registered: Jun 2010
| IP: Logged |
posted
Kebbler, Thank You. For writing. I have tried everything,Found 1 ID Dr. that after quite bit convincing having late stage. After 20 yrs. Gave me pic line finally for 5 wks. even that got messed up. Had to go back & get pic line back in after 2 wks. Then just when herx. took me off & did not follow,up. DUH! If he only after fighting 20 yrs. for help on my insurance plans. Have no choice so expensive for pic line which I truly need at this stage. Arghhh After cellulitis now am on strong antibiotics for that. Hmmmmm??? Good Luck to You still all we have sometimes?? Hugggsssss, To All Need. Kerry
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Misfit, I love your post. You are confirming what my lyme doctor tells his patients.
He says that they will see a 30-40% improvement in symptoms with dietary changes alone. Got to be strict. Keep up the good work. I pray you find a lyme doc very soon.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
I second/third the statements about diet. My son's fatigue started to improve right away in the first week after his first LLMD visit. Granted, he was put on antibiotics during the first visit, but I honestly believe that the dietary changes were hugely helpful. The doctors are all a bit different, but he went straight to lots of protein-- fish, chicken, turkey, eggs, soy or coconut yogurt and lots of above-ground vegetables. He cut out carbs, especially wheat, and got off of all cows milk products. He was told to drink lemon water all day long.
Get an LLMD who takes Lyme seriously for the nightmare it is.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
| IP: Logged |
I was dx with Late Stage Lyme Disease June 1 of this year.
I too was only treated with 100mg of Doxy 2x day which is not near enough with all the learning I have done.
I live in St. Louis and LLMD's are unheard of. I see you are in Washington D.C. Fortunately you are a lot closer to a lot of LLMD's.
That is the first thing I would recommend. Get on a waiting list!!
I have not found any help at all since the initial 4 week abx.
I am scared to death. I visit LymeNet every day and learn more and more.
The more knowledge you have, the better off you are going in for treatment. You will know what others that have already been there know. You will have the right questions to ask and perhaps a suggestion or two.
Good luck to you.
Connie
-------------------- Sick and Tired of Being Sick and Tired!! Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic