posted
I have been treated for lyme for 5 months now and feel I haven't had much improvement. Is it possible that the symptoms I have are the result of post-lyme syndrome? I have read about the controversy with the IDSA which supports the post lyme theory. How can you determine which approach is right especially when I'm not seeing improvement. My symptoms are: extreme muscle pain and weakness, leg vibrations, eye twitching, migrating joint pain and strange sensations in my arms. I have tested positive both by Igenex' standard and by the CDC standard. Help!!!! I keep questioning what is going on. How long does it take to feel better?
Posts: 15 | From Medford, nj | Registered: Aug 2008
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posted
Reggie, everyone is different. I remember in the
beginning (late 2006) I felt the same way as you.
You may need to go on IV for a while to feel any
better, lets just hope you get better. Alot of
us are not getting any better....best wishes
Posts: 208 | From Hudson Valley, New York | Registered: Mar 2008
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massman
Unregistered
posted
Reggie are you doing any detox ?
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Reggie,
You ask, after 5 months of treatment if continued symptoms could be Is it possible that the symptoms suggest post-lyme syndrome?
Fortunately, No. You have not yet received treatment long enough to even give that a thought. And, really, there is no such thing. True, some symptoms may linger or even be permanent but not the entire batch of symptoms.
The good news is that there are many who have gotten better with the right combination of treatment for the correct amount of time - sometimes with support measures.
Are you on combination treatment?
Have the coinfections been assessed/addressed?
What is your liver support?
What is your adrenal support?
Sometimes, by making adjustments, even in the support measures can help (such as adding glutathione).
I know it's frustrating and this really tests patience, so with sadness, yes, further patience is required. However, you have a chance of getting much better if you pursue treatment - you may need to refine or shift gears - but please do continue to pursue the quest.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - (author's details at link)
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.
Microbial Pathogenesis Volume 44, Issue 3, March 2008, Pages 262-264
Copyright � 2007 Elsevier Ltd All rights reserved.
Residual brain infection in murine relapsing fever borreliosis can be successfully treated with ceftriaxone
Christer Larsson1, a, Jenny Lundqvist1, a and Sven Bergstr�m, a, _aDepartment of Molecular Biology,
Laboratory for Molecular Infection Medicine Sweden (MIMS), Ume� University, SE-901 87 Ume�, Sweden
Available online 19 November 2007.
Abstract
Like several other spirochetes, relapsing fever Borrelia can cause persistent infection of the central nervous system (CNS).
By treating mice harboring residual Borrelia duttonii brain infection with the bacteriocidal, cell wall inhibiting antibiotic ceftriaxone, bacteria were cleared from the brain.
This shows that the residual infection is not latent but actively growing.
- full article for purchase through link above.
====================
Excerpt: `` . . . one year after initiating the antibiotic and anti-protozoal treatment, he was declared to be free of motor neuron disease by his neurologist . . .'' from:
ALS Caused by Lyme Disease with Babesia Co-infection Posted March 15, 2008
After experiencing difficulty speaking during his nightly radio show, Charles McPhee was diagnosed with a bulbar (neck and throat) presentation of ALS (amyotrophic lateral sclerosis), or Lou Gehrig's disease, on June 23, 2006.
After researching the possible causes of ALS, Charles decided to treat his ALS with a combination of antibiotics (ceftriaxone, Flagyl, azithromycin) and anti-protozoals (Mepron and Malarone).
His rationale for using them is based on a recently documented link between ALS, Lyme Disease, and Babesia.
In a paper published October 22, 2006, Dr. David Martz of Colorado Springs, CO, outlined a harrowing journey through ALS... and back. He was diagnosed in April of 2003, and soon was unable to drive, dress himself, or walk. Over the next few months his health continued to deteriorate rapidly, and he was forced to retire from his medical practice.
Eight months later, while bedridden and confined to a wheelchair, he learned from a friend who sent him a newspaper clipping that it was possible he really had been infected with Lyme disease, an infection commonly carried by ticks.
After 6 negative tests for Lyme (late-stage Lyme is notoriously difficult to detect in the human body), an antibiotic-provoked urinary PCR test in December, 2003, finally showed positive for Borrelia Burgdorferi (Bb), the spirochete bacteria that causes Lyme disease.
During a visual scan of his blood, rings around his red blood cells were also detected, indicating a probable co-infection with Babesia microti, a malaria-like protozoa that is estimated to be transmitted in over 60% of Lyme infections.
Based on this new information, Dr. Martz began using a combination of antibiotics and anti-protozoals to treat his ALS. He noticed dramatic improvement in his symptoms.
Within 12 weeks he was walking again without assistance, and in February, 2005, one year after initiating the antibiotic and anti-protozoal treatment, he was declared to be free of motor neuron disease by his neurologist . . . .
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
mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
Hi Reggie:
Some people that are newly infected can heal within 5 months but if you have "Chronic Lyme" chances are it will take much longer. The longer you have Lyme the longer it typcially takes to heal.
I am coming up on my three year anniversary for treating Lyme but I've had it many many years. I am slowly improving and feeling SO much better than I did in 2006 (I was very ill).
Healing from Lyme takes a lot of work. Detox, as mentioned above is so important - I attribute my feeling good to my Infra-Red Sauna sessions which is great for detox.
Diet is also important. Eating more veggies and fruits and avoiding sodas, processed foods, sugar etc.
Drinking filtered water getting the proper amount of rest, exercising to your ability and strict adherance to your protocol are also key.
I'm sure I'm forgetting things, too!
I pray that you will heal and that you will make good decisions about your treatment.
Posts: 1761 | From USA | Registered: May 2006
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
ILADS LLMd's have proven over and over with long term treatment, wellness and remission of symptoms are possible. Post Lyme Syndrome is a term used by the IDSA, simply because they believe Lyme doesn't need treatment longer than 30 days and of course no one with chronic lyme is cured in 30 days, so they label it PLS.
You have 2 choices - believe the IDSA and go no further in treatment after 30 days or believe ILADS (the experts in Lyme treatment) and keep treating as long as it takes and symptoms will subside.
Treatment is highly individualized. My LLMd (do you have a good LLMD?) treats usually 3 months on a combo of abx, if no progress is seen, then another combo is tried for 3 months and this continues for as long as it takes to start showing improvement.
Treatment takes years usually, this is a disease. Diseases are "managed" we hope for "remission".
I, just like you couldn't believe I wasn't well within 5 months or even had shown much improvement. 3 years in - still fighting and now considering IV, although I know it may help, I also know it is not "the answer" for everyone but it does seem that the majority that get well did IV at some point.
To lift your spirits read some success stories, people can get well.
Make sure you have a good LLMd who is treating the co-infections as well as Lyme or you will never progress.
posted
As far as I know, even after all these years, there is NO evidence to support post Lyme syndrome.
If there is any evidence that I'm not aware of -- which very well may be -- please, someone point it out.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I don't believe in "post-Lyme syndrome".
I believe in chronic Lyme.
I have chronic Lyme.
I don't know when I was infected or for how many years.
At least 7+ and will probably never know.
I am 28 months into treatment.
Much improved, but not in remission....yet.
You may have co-infections which can make treatment
More complicated and longer.
Are you seeing a LLMD?
Have you considered co-infections?
Maybe time to call your LLMD and talk about
Where you are, where you want to be, and how to get there.
Unfortunately this is not a sprint.
It is a marathon.
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I was diagnosed with post lyme syndrome after being treated with 30 days of doxycycline. I had early disseminated lyme, classic bull's eye rash and all.
I feel like an idiot for believing the infectious disease "specialist". He told me my symptoms would go away in a couple weeks. Then a couple months. Then six months.
My symptoms continued to grow worse and worse until I was so weak my mother had to fully take care of me. I am 30 years old.
And still my diagnosis remained post lyme syndrome. "It rarely lasts a year." I was told. But around one year I was told sometimes PLS can last two years.
Once I was back on antibiotics I began to improve. Then diagnosed with babs and treated that. I am detoxing too. It has been 1 1/2 years.
I am thankful to be going forward now, not backward.
I used to assign numbers to my wost symptoms. i.e. 1-10 for headaches. Looking back I can see the improvements although I have to compare myself to a year ago so I can see my gains.
Do as much research as you can and ask lots of questions, it will help you in the long run.
Health and Healing
-------------------- -Love and Gratitude Posts: 69 | From another planet far far away | Registered: Oct 2008
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adamm
Unregistered
posted
While we can't tell you with certainty the details of the treatment that will be the answer for you, we can examine established facts and make inferences about what's probable and what's not. Unfortunately, it's been proven that Lyme, once the spirochetes have disseminated, cannot be cured with current treatments. The studies that the powers that be used to "demonstrate" that chronic Lyme didn't exist all relied upon the assumption that a blood or CSF test that didn't meet their arbitrary criteria signified that the respective subject wasn't infected...a complete falsehood, as you will see on
lyme-info.net lymecryme.org, and pubmed.
We also know from experience that many with persistent symptoms can get better or even recover completely with prolonged Lyme txment (on the order of years to maybe even a decade), so if you're still sick, you'd best keep looking at Lyme txment for a bit longer.
quote:Originally posted by lymebytes: ILADS LLMd's have proven over and over with long term treatment, wellness and remission of symptoms are possible.
Post Lyme Syndrome is a term used by the IDSA, simply because they believe Lyme doesn't need treatment longer than 30 days and of course no one with chronic lyme is cured in 30 days, so they label it PLS.
You have 2 choices - believe the IDSA and go no further in treatment after 30 days or believe ILADS (the experts in Lyme treatment) and keep treating as long as it takes and symptoms will subside.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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