Post-treatment Lyme disease syndrome (PTLDS): it exists!

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Post-treatment Lyme disease syndrome (PTLDS) exists. Although many patients complain of post Lyme symptoms, doctors sometimes do not recognize this for what it is. Because the post Lyme complaints and symptoms are all related to a pathological late and slow inflammation, and treatment of  these cases with palmitoylethanolamide (Peapure) have yielded positive results, here a detailed description of such a post lyme disease case.

Dose of PeaPure: 3 times 400 mg during at least 3 months in cases of post Lyme inflammation. This natural anti-inflammatory agent is available as a supplement via the internet and directly via a pharmacy in San Diego (USA). Palmitoylethanolamide is a body-own molecule and side effects have not been reported. It can be combined with any other supplement or prescription drug, PeaPure is not an antibiotic however, it does not kill the parasites, if an infection is still ongoing.

The cases of positive response on palmitoylethanolamide and its use have been described in German.

Post Lyme disease syndrome description

 Two weeks after completing a course of antibiotics, e female Lyme patient began experiencing lower-extremity neuralgia as well as tingling in her hands. She described her pain as “electrical currents running down her legs.”

The patient visited her primary care provider, who started a second 30-day treatment of doxycycline (500 mg twice daily) and gabapentin (900 mg daily before bed).

The patient has been referred to a local physician who has extensive experience with Lyme Disease for continued management of her medical therapy.

At the time of the case report, a year later, this patient reports that her symptoms include chronic fatigue and intermittent arthralgia that has required a cane to mobilize at times. Her only medication is methylphenidate (36 mg daily) for fatigue.

Few of Lyme patients will have persistent arthritis after antibiotic therapy, and are classified as antibiotic-refractory Lyme arthritis. Synovial biopsy specimens reveal exaggerated proliferation of synovial tissue, which covers articular cartilage, causing cartilage destruction and permanent deformities.16,20 Arthritis of late Lyme Disease is similar to rheumatoid arthritis, with its characteristic pannus development and consequences.

Early LD and EM are treated with antibiotics on an outpatient basis. Doxycycline (100 mg twice daily by mouth), amoxicillin (500 mg twice a day by mouth), or cefuroxime (250 mg twice a day by mouth) for 10–14 days are equally efficacious.

Doxycycline is often the drug of choice, because it is also considered the treatment for the Gram-negative bacterium Anaplasma phagocytophilum, a potential tick-borne coinfection.29 Macrolides like azithro- mycin, clarithromycin, and erythromycin should not be selected, due to possible antibiotic resistance that has been identified.

Borelliose und PalmitoylethanolamidApproximately 10%–20% of patients treated for LD with a recommended 2-week course of antibiotics will have linger- ing symptoms of fatigue, headache, musculoskeletal pain, and lethargy. Thirty-four percent of a population-based, retrospective cohort study in Massachusetts were found to have arthritis or recurrent arthralgia, neurocognitive impair- ment, and neuropathy or myelopathy, for a mean of 6 years following treatment for Lyme Disorder.  Sixty-two percent of a cohort of 215 consecutively treated LD patients in Westchester County, New York were found to have arthralgia, arthritis, and cardiac or neurologic involvement for an average of 3.2 years after treatment.  This complication is commonly known as post-treatment LD syndrome (PTLDS). However, in the absence of additional tests to rule out the eradication of the initial infections, others would argue that the more appropriate diagnosis is chronic LD.

Coinfections in Lyme disease

Coinfections are a troubling complication for patients with chronic LD. The reported prevalence of coinfections in the US ranges between 4% and 28%. In the US, coinfections can include Anaplasma phagocytophilum, which causes human granulocytic anaplasmosis, and babesiosis.

The risk for coinfections is increased, due to the ixodid tick being a vector for all three. Symptoms of a babesiosis infection include fatigue, malaise, weakness, fever (.38°C), myalgia, arthralgia, and anorexia. Severe babesiosis infections may progress to acute respiratory distress syndrome, disseminated intravascular coagulation, congestive heart failure, renal failure, myocardial infarction, splenic infarcts or splenic rupture, and death.

Records of 139 patients with babesiosis between 1982 and 1993 were analyzed, and nine patients (6.5%) died, 35 (25.2%) were admitted to the intensive care unit, and 35 (25.2%) required hospitalization for more than 14 days. Rashes in patients with babesiosis are often reflective of concurrent infection with Lyme Disease.

Conclusion:

Following an antibiotic regimen twice the length and double the recommended treatment dose outlined by the Infectious Diseases Society of America (IDSA), patients can still experiences symptoms of fatigue and arthralgia consistent with PTLDS.

Dose of PeaPure for treatment of Post-treatment Lyme disease inflammatory symptoms

Dose recommendation: start with 1200 mg daily in 2 to 3 gifts (e.g. 2 capsules after breakfast and 1 capsule after diner).

PEA is a body own modulator, and not a painkiller such as NSAIDs and morphine. It does mostly need some weeks to slowly bring the body in balance on a number of biological levels, and reduce the ongoing Lyme inflammation. As PEA has a number of modulating effects, both on the short term as well as slowly increasing, there are patients experiencing quick pain and inflammation relief within some days. There are also patients who need more time (especially in chronic inflammation and pain situations, such as in Lyme). Therefore the recommendation is to test the efficacy of PEA during 3 months in cases of chronic symptoms due to post Lyme syndrome, before deciding on its efficacy.

Source:

James R Palmieri et al. Lyme disease: case report of persistent Lyme disease from pulaski County, Virginia,  International Medical Case Reports Journal, december 4 2013

Further reading on post treatment Lyme disease syndrome:

Development of a foundation for a case definition of post-treatment Lyme disease syndrome.
Aucott JN, Crowder LA, Kortte KB.
Int J Infect Dis. 2013 Jun;17(6):e443-9. doi: 10.1016/j.ijid.2013.01.008. Epub 2013 Feb 23.

Correlates of Perceived Health-Related Quality of Life in Post-treatment Lyme Encephalopathy.
Chandra AM, Keilp JG, Fallon BA.
Psychosomatics. 2013 Nov-Dec;54(6):552-9. doi: 10.1016/j.psym.2013.04.003. Epub 2013 Jul 9.

Probable late lyme disease: a variant manifestation of untreated Borrelia burgdorferi infection.
Aucott JN, Seifter A, Rebman AW.
BMC Infect Dis. 2012 Aug 1;12:173.

Post-treatment Lyme disease syndrome symptomatology and the impact on life functioning: is there something here?
Aucott JN, Rebman AW, Crowder LA, Kortte KB.
Qual Life Res. 2013 Feb;22(1):75-84.

8 responses

  1. There’s no such thing as “post Lyme Disease syndrome.” If symptoms of a sinus infection still exist, you still have the sinus infection. Ditto for strep throat. Tuberculosis takes a minimum of 6-9 months of antibiotic to cure. If the symptoms persist, nobody says the patient now has “post tuberculosis syndrome” and stops treatment! They continue the treatment! Yes, chronic Lyme patients suffer from chronic inflammation and maybe this product will help, but if one only takes 2 weeks of antibiotic for Lyme, they are doomed to have chronic Lyme. Why? Because the life-cycle of the borrelia spirochete is 1-4 WEEKS. Compare that to the streptococcal bacteria, which has a 10-12 hour life-cycle, for which one is give 10 days-2 weeks of antibiotic. Do the math. Based on the life-cycle of the bacteria, one should have a minimum of 8 weeks of antibiotic for borrelia burgdorferi, and perhaps much more (there are 100 different strains of borrelia burgdorferi in North America; 300 world-wide). Any less will likely result in chronic symptoms. It’s a no-brainer. Even a lay person could understand this. Too bad so many in the medical community do not! (have brains, or use them)

    1. palmitoylethanolamide4pain | Reply

      many people do not understand that after a chronic infection a chronic inflammation can linger for months to years, and this is what was meant with chronic Lyme…even after flu one can develop such a chronic inflammatory slow and low grade disease state…

      1. Sure, but this is not the case with a disease that is rarely treated correctly in the first place. Again, there is simply no way that 2-3 weeks of antibiotic are going to completely eradicate a bacteria that has a 1-4 week life cycle. Or, if it can, please explain how.

      2. palmitoylethanolamide4pain

        there is consensus that a 2-3 weeks regime is sufficient, has nothing to do with life cycles of the bacteria; long treatments only create damage to the intestinal system…

      3. Ummmm . . . Do you know anything about the treatment for TB??? Standard treatment is 9 months!

        There are plenty of other long-term infections for which no one bats an eye about giving long-term antibiotics–except for Lyme and co-infections! Why?? (Politics? Egoes? Turf protection?) And then there’s the teenagers given tetracycline for YEARS with no questions or worries because of a little acne, even though there are plenty of proven safer methods to clear up one’s skin. How many docs are dragged into court or threatened with the loss of their medical license for over-use of antibiotics for treating acne–something for which antibiotics aren’t even fully necessary?? Try None! So don’t give me this caca about concern for damage to the intestinal system when long-term antibiotics are used to treat Lyme, but never any other infections! The only time I ever hear concern expressed about possible intestinal damage is when antibiotics are used for the treatment of Lyme.

        Have you ever heard of pro-biotics?? Have you ever heard of saccharomyces boulardii? Yes, it IS possibly to take antibiotics long-term without any damage to the intestinal system, and most Lyme-literate MDs make sure their patients take the proper precautions and supplements, including dietary changes–unlike the docs who prescribe tetracycline for acne!

        And how on earth can a treatment regime be designed for a bacterial infection without regard to the life-cycle of the bacteria being treated? It is when treatment is insufficient that bacteria are more likely to become resistant, ie., too low a dose and/or for too short a period of time.

        (Meanwhile, let’s get the antibiotics out of animal feed, and the chemicals and GMOs out of our fruits and vegetables and many human intestinal problems will greatly improve.)

        Maybe your new treatment for chronic inflammation is wonderful, and I hope for the sake of all those with auto-immune diseases that it is! But the bottom line here is that there is no such thing as “post Lyme Disease syndrome.” If symptoms still exist, the bacterial infection still exists. You also fail to realize that not all of the symptoms of chronic Lyme are due to inflammation, especially where the many co-infections of tick-borne diseases are involved.

  2. Correction–it may be the case that chronic inflammation has developed as part of chronic Lyme, but it is also true that the vast majority of chronic Lyme cases were not treated correctly in the first place.

  3. You are misinformed…all antibiotics used to treat lyme depend on the organism growing…they either tackle ribosomes (e.g., doxy) or cell wall synthesis (e.g., amoxy) and you need coverage during a multitude of reproduction cycles…2 weeks treatment incorrectly assumes a bacterial replication rate of a few hours. Borrelia is DAYS to WEEKS. In addition, Borrelia has MORE genetic material THAN ANY OTHER KNOWN bacteria. It has roughly six times, yes SIX TIMES the amount of genetic material as its spirochete cousin Treponema which is responsible for syphilis…

    Think about that. It has all that DNA for a reason…it provides it survival and pathogenic advantages that we don’t fully understand. For example, Borrelia is pleomorphic with at least 3 different morphologies, to include a cyst form that is metabolically inactive and thus will NOT be treated by most antibiotics. In addition Borrelia has been shown to form biofilms (google lyme biofilm university of new haven) which make it all but immune to antibiotic action. On top of all this, CDC sponsored research has shown that Borrelia can infect neural cells intracellularly (google Jill A. Livengood lyme), which again means that you would have to have antibiotics that could cross the blood brain barrier in significant concentrations, and STAY there and have intracellular action.

    In other words, IDSA idiots that claim people with recurring symptoms have a mystery syndrome instead of active, undertreated infection, are delusional and willfully ignorant of the scientific evidence. Been fooled into believing that long term antibiotic use has been proven unsuccessful by the IDSA? (google Allison DeLong, a biostatistician at Brown University’s Center for Statistical Sciences and lead author of the study published online Aug. 19, 2012, in Contemporary Clinical Trials)

    Post Lyme “syndrome” was created out of thin air because the IDSA couldn’t explain and still cant explain why their treatment guidelines leave people sick. Their egos are more important to them than our well being. Educate yourself, read the research, don’t take anyone’s word for anything.

    All this being said, it is possible that PEA might help undo some of the immune system damage, chronic infection, chronic inflammation, and immune modulation that we are just beginning to understand that Borrelia is capable of…but that is UNKNOWN.

  4. Can PEA be taken in definitely? i have been taking this for several years and it was recommended I stop for awhile. The PEA has calmed down the hypersensitivity of the nerves in my abdominal wall. Decreasing the dose from 1200mg per day down to 400mg and my symptoms are increasing again.

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