posted
I have Lyme's. I've been on 2gm Rocephin IV for 8 weeks and he insurance company approved another 4 weeks. My doctor says that's all I'll need, 12 weeks total. Prior to this I was taking 200gm Doxy for 4 weeks. Will that be enough?
I've had it for 2 years almost to the day and was diagnosed in July 2008. Spinal tap showed it's in my nervous system. In June/July, left hand was shaking, can't turn car key with right hand, stiff neck, exhaustion, fatigue, afternoon naps, no stamina, stiff body especially at night, severe night sweats, memory loss, word confusion, lightning flashes in left eye, hundreds of floaters in both eyes.
Posts: 14 | From Trenton, New Jersey | Registered: Jul 2008
| IP: Logged |
The truth is always better right? You have neurologic lyme disease. You will always need to be on intravenous or intramuscular antibiotics. They are the best antibiotic regimens for treating neurologic lyme disease.
If insurance won't pay for these regimens, then you need combination oral therapy. Example: omnicef and ketek and even other orals.
Some people are getting results with alternative therapies, such as naturopathic medicines. Try to get a good referal.
Based on the severity of your symptoms, I think you need a new doctor if this doctor is telling you 12 weeks is enough.
I have had lyme disease since 1990, so I have eighteen years of experience.
I am still learning the computer world, including Lymenet. Feel free to send me a private post.
Good luck. We'll Win
Posts: 107 | From maryland | Registered: Feb 2007
| IP: Logged |
I apologize. I just posted what could certainly be seen as a very bleak response to Lawrence's question.
Well there is a bright side/silver lining: I probably can speak for everyone when I say, I rather would not have gotten Lyme disease. It has had huge repercusions on my life.
But having Lyme disease for eighteen years, there is a positive. I have met, and worked with, and advocated with, and protested with (anyone remember the protest outside the CNN building in New York? How about the protests in Washington against the FDA?), and commiserated in support groups with, some of the best and kindest people in the world.
Let's keep it up.
One day We Will Win!
We'll Win
Posts: 107 | From maryland | Registered: Feb 2007
| IP: Logged |
One more thing. I told my wife about my two posts and she said I should add one more thing, and she is right.
After all these years on antibiotics, they do work for me. Most doctors switch around their patients' regimens for a number of reasons, from avoiding resistance, to finding more effective remedies.
When I go off the antibiotics I quickly go down hill. I have better days and worse days, but with the antibiotics I can function pretty well.
And as I said in my first post, some people are succeeding now without any antibiotics. They are being treated by naturopaths.
It is going to be a lot of trial and error and experimenting with many remedies, and perhaps several doctors and naturopaths.
The best of luck. Keep smiling if you can. Join a support group. This lyme net is a great thing.
Your Fellow Lymee, We'll Win
Posts: 107 | From maryland | Registered: Feb 2007
| IP: Logged |
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
FYI-
I have seen several very bad neuro cases in which 4 weeks resulted in complete cure. I have also seen some that it tooks years of IV to recover (myself included) to the point of no drugs needed. In the end I think it all depends on exactly what combination of infections you have, your DNA and how long you have had it.
Posts: 1184 | From north america | Registered: Feb 2003
| IP: Logged |
adamm
Unregistered
posted
Lawrence--Your doctor does not know enough to treat you properly, as is evidenced by his putting you 200 mg doxy/day (half the dose of doxy you needed to have any chance of improving. Please find an ILADS LLMD.)
IP: Logged |
posted
Personally, 12 weeks did it for me. Before my IV, I had tremors, muscle weakness, extreme pain, and other assorted neuro symptoms that orginally made my doctors think I had MS. Now I'm playing ice hockey.
I will say that when I started on IV, my doctor didn't really have a set amount of time in mind that I'd be on it. We were basically planning to take it one month at a time - I saw him once a month, and called to check in every 2 weeks - and just see how it went. If I were you, I'd talk to my doctor about what he plans to do if you feel you still need IV treatment after the original 12 weeks is up.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
| IP: Logged |
posted
Greetings All! This is an interesting thread.
To ladycakes: How did you and your doctor know that 12 weeks was enough? Based on symptoms or was there a particular lab test that showed the treatment had worked?
I wish you all success in your treatments!
Posts: 170 | From New Jersey | Registered: Jun 2008
| IP: Logged |
Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
up for more comments
Posts: 1366 | From Southeast | Registered: Sep 2005
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Topic: 12 weeks Rocephin IV enough? -
Not according to much of the literature and patient experience. Are you also treating coinfections in addition to lyme?
And what are the other medicines beside the Rocephin? Monotherapy is never enough for lyme. A combination is required to also address the cyst form.
What is your liver, endocrine and cardiac support? (i.e. Milk thistle; ashwagandha or cordyceps; hawthorn?)
There are many more articles that address this but this is a start:
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - By Virginia Savely, RN, FNP-C
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
posted
I think the most important piece was left out....how are you feeling? If back to normal, than it might be that you've been treated sufficiently. 12 weeks of IV certainly is aggressive enough to kill many pathogens!!
Posts: 561 | From mass | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Is your doctor an ILADS-educated LLMD? It does not sound as if he is familiar with all the research.
It's the life span / life cycle of the spirochete and all its forms that also directs the timing of this.
The study done at Columbia found that those with a smiliar course of IV as you are at, relapsed.
So, if you go off the rocephin, there may be other kinds of treatments that can back up your continued success and prevent relapse.
Allicin or freeze-dried garlic might be helpful in this case. Olive leaf extract or andrographis, also good to consider.
Books above detail options.
For that study from Columbia you can search: "Fallon, borrelia, IV"
I will hunt for where I put that article in my jumbled computer file.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
My concern is that the grant was only for monotherapy when all the lyme research states that combination treatment is required to address all stages and forms of the borrelia spirochete - and longer to address its full life cycle.
However, grant awards being what they are, this is what the study was set up to be: 10 weeks of IV Rocephin.
The control group was not comprised of lyme patients but of healthy people (it would be cruel to withhold tx from anyone who is ill).
Improvements seemed to hold for few months after treatment but, by week 24 (14 weeks after completion as I count it), marked decline was noted.
Background: Optimal treatment remains uncertain for patients with cognitive impairment that persists or returns after standard IV antibiotic therapy for Lyme disease.
Methods:
Patients had well-documented Lyme disease, with at least 3 weeks of prior IV antibiotics, current positive IgG Western blot, and objective memory impairment. Healthy individuals served as controls for practice effects.
Patients were randomly assigned to 10 weeks of double masked treatment with IV ceftriaxone or IV placebo and then no antibiotic therapy. . . .
Results:
After screening 3368 patients and 305 volunteers, 37 patients and 20 healthy individuals enrolled. Enrolled patients had mild to moderate cognitive impairment and marked levels of fatigue, pain, and impaired physical functioning.
Across six cognitive domains, a significant treatment-by-time interaction favored the antibiotic-treated group at week 12. The improvement was generalized (not specific to domain) and moderate in magnitude, but it was not sustained to week 24.
On secondary outcome, patients with more severe fatigue, pain, and impaired physical functioning who received antibiotics were improved at week 12, and this was sustained to week 24 for pain and physical functioning.
. . .
Conclusion:
IV ceftriaxone therapy results in short-term cognitive improvement for patients with posttreatment Lyme encephalopathy, but relapse in cognition occurs after the antibiotic is discontinued. Treatment strategies that result in sustained cognitive improvement are needed.
I have seen several very bad neuro cases in which 4 weeks resulted in complete cure. I have also seen some that it tooks years of IV to recover (myself included) to the point of no drugs needed. In the end I think it all depends on exactly what combination of infections you have, your DNA and how long you have had it.
Hi! I'm glad you've had success with IV therapy. I'm currently on my first month of IV Rocephin and insurance likely won't cover longer than this first month. Does insurance cover yours? If not, how are you able to afford it?
-------------------- "Life doesn't have to be perfect to be wonderful."
Biofilms need to be addressed with separate measures from the typical medicines. A good LLMD can guide you in this. Lack of attention to biofillm is one contributing factor of treatment failure or relapse.
----------------------
Biofilms of Borrelia burgdorferi and Clinical Implications for Chronic Borreliosis - Alan B. MacDonald, MD
May 17, 2008 University of New Haven Lyme Disease Symposium New Haven, Conn.
AND - in addition to the other tick-borne infections which I really hope your doctor adequately assessed, it is good to also consider this information:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive. Thus you may be fighting lyme and other pathogens. This is what happened to me.
It really helps to get a thorough evaluation...then treat what is most obviously wrong.
Here's the info. I apologize ahead of time, for I don't know how to copy and past the long webpage links into the URL...and I'm sure not going to type the entire link in... I feel it is important to direct you right to the link.
Best, Timaca
========
If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
After reading another currrent post of yours about having a hard time riding faster - on a 7 mile bike ride:
You might want to check out Dr. Burrascano's P.T. / Rehabilitation guidelines - it is a very specific and graded plan - Exercise is strongly encouraged - but not everyday - and in measured increments. However, aerobic exercise is discouraged until the patient is nearly better.
Rehabilitation section is 7/8 of the way down the page
-----------------------
You also might want to check out - Coxsackie B3 virus testing -- it can cause inflammation of the heart muscle caused by the virus. If this is present, aerobic exercise can damage the heart.
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!
![[Frown]](frown.gif)
Printer-friendly view of this topic