https://www.ommegaonline.org/article-details/The-Post-Lyme-Disease-Treatment-Syndrome-(PTLDS)-a-review-of-its-origin-and-its-consequences-in-the-socio-economic-sphere./2407#.XKLo6qbumDo.linkedin

The Post-Lyme Disease Treatment Syndrome (PTLDS) a review of its origin and its consequences in the socio-economic sphere.

DR. JOSE LAPENTA
Lapenta J, Lapenta JM

Conclusion

It is demonstrated that the chronic symptoms of Lyme disease are a reality, referred to as:

Chronic Lyme disease (CLD); or Syndrome- Post-treatment of Lyme disease (PTLDS).

As we said at the beginning, the CDC does not recognize the term Chronic Lyme Disease (CLD) because it is confusing[1].

With respect to this, we conclude that the CDC is wrong because data demonstrated that months or years after adequate treatments with antibiotics, patients can have the same or worse symptoms, which gives truth to the term: chronic Lyme disease (CLD).

On the other hand, the CDC alleges that the term Post-treatment of Lyme disease syndrome (PTLDS) is used by some scientists to define symptoms after the treatment of the disease and that it is due to “unknown cause”:

With regard to this aspect, the “so called” Post-treatment of Lyme disease syndrome (PTLDS), is the same chronic Lyme disease, consisting of:

  • Lyme positive patients who were never treated.
  • Positive Lyme patients who after treatment in acute phase relapsed months or years later, and reached the secondary or late stage with symptoms equal or more severe than at the beginning.

Patients who were misdiagnosed due to lack of effective diagnostic tests and reached the chronic stage. Today the CDC recognizes that its diagnostic tests are not 100% effective.

Well-diagnosed Lyme patients who never responded to the treatments recommended by the CDC.

  • We also disagree with the CDC about the definition of “unknown cause” when most studies and research show that it is a chronic encephalopathy produced by Borrelia burgdorferi, either by:
  • Its persistence in the bloodstream, cerebrospinal fluid and tissues due to resistance to treatment, under the well-known mechanism of “Biofilm”.
  • Generation of neurological damage due to the persistence of Borrelia burgdorferi in tissues that do not regenerate, such as the nerve cells.
  • An inflammatory process that remained in the nervous system and tissues after eliminating the causative agent.
In some patients, the coexistence of other diseases such as Erlichiosis, Babesiosis and Bartonellosis, which worsen the symptoms and obstruct the treatment.

We find with an unprotected society, the reality is that thousands of patients are discarded as positive Lyme after 4 months of treatment, because the treatment guidelines of the CDC say that in that time or less you will be cured, which we prove is false in a good proportion of patients.

In 2019 May, is the limit for the recognition of ICD-11 Codes of Lyme disease (International classification of diseases), and the WHO refuse to recognize them all, which will cause patients without coverage for their treatments. One of the unrecognized codes is congenital Lyme[46-54] .

The global community of patients with Lyme must organize well and adequately claim from health authorities such as the World Health Organization (WHO) to recognize the entire Lyme codes, and ensure coverage of their treatment at all levels.

The Syndrome post-treatment of Lyme disease (PTLDS), which is nothing more than the ”chronic symptoms” of the disease, is being used perversely to cover the reality of this disease, avoid coverage by health insurance, and tell patients: “you have nothing, go to a psychologist” … when their blood and brain are sailing in a sea of ​​Borrelias.

Comments

With regard to the proposal of new treatment guidelines for Lyme disease, we prefer to wait for what the health authorities at the world level will propose; then we will make a new publication about it.

Dr. José Lapenta Dermatologist

Dr. José M. Lapenta Md

Acknowledgments

To the Lyme world community that fights for its rights to be treated as real patients and not as psychiatric patients.

To my son J. Miguel MD, for his logistical support and co-author.

To all patients with Lyme especially Stacy Cellier Gomez whose story was quite motivating.

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_________________

For a list of 700 peer-reviewed articles on the persistence of Lyme:  https://www.ilads.org/wp-content/uploads/2018/07/CLDList-ILADS.pdf

Great article by microbiologist Holly Ahern where she takes the PTLDS moniker head-on showing that the actual number of those with persistent/chronic symptoms is more like 60%:  https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/

Please spread the word on this as researchers seeing the falsely skewed low percentages of 10-20% aren’t going to see the relevance in studying this further.  If; however, they see that 60% of patients are affected chronically, that puts the whole matter into a different urgent category.  We need to point out CDC/NIH errors.