8 Replies

• Author
  Posts
• June 21, 2021 at 10:18 am #29838
  Kristelle Reyes

  Member

  SSRP Staff

  From: @amybodyscience-life

  Tagging on to my earlier post, any suggestions for LL37 IV dosing and frequency? I have an ALS pt who was diagnosed with Covid April 2020. He has a significant history of tick born disease and was IgG for multiple infections but now I’m seeing IgM. On research, Covid appears to be able to “reactive” certain infections. Interestingly, I had very good disease management for almost 2 years w very little progression until Oct/November 2020, 7 months post covid and now the IgM lyme titer inspite of the fact that he lives in Miami, a non-lyme area. I’m thinking the motor neuron progression is being triggered by immune dysfunction stemming from covid infection and lyme re-activation. My plan is LDN 4.5mg for Treg control and sirolimus to inhibit mTOR. I want to include LL37 for biofilm disruption and infection control. I’m also looking at ebselen to support mitochondrial function and prevent infection-induced mito damage and resulting increase ros but I can’t find a supplier. I have the post-covid vitamin D, C and quercitin combo on board. I’m open to any other suggestions, would really appreciate some direction on LL37 IV protocol and any thoughts on finding ebselen or a similar peptide substitute.

  Thanks everyone!!

  June 21, 2021 at 10:23 am #29839
  Kristelle Reyes

  Member

  SSRP Staff

  From @mdtaylormd-funcgmail-com

  First, my sympathies go out to this patient, and you, given the challenge of ALS. Second, I hope this case can afford some other piggybacking questions (which may well be served best within the SSRP forum – @kerenkang , please let us know if this should be moved). The trouble that comes to my mind with ID history is ‘what did those infections do to disrupt the gut, the neuronal efficiency (as post-Lyme involves), and immune polarization?’. For whatever reason myz is also cueing up the question of false positive Lyme serology, with crossreactivity to EBV (specifically with bands 23, 39, and 41 on a WBlot). The plan you’ve laid out is sophisticated and covers a lot of areas. Could consider something like a Wahls or “mito diet plan” (IFM toolkit has this, if you have access to it), and connecting with a coordinated exercise training program (like a boxing gym) to train the motor component and leverage neuroplasticity (stimulated, too, by the mito peptides).

  My understanding of LL-37 is that 100mcg qd for -maximum- 6 weeks may be useful in VBI (vector-borne illness) but care/finesse/frequent reevaluation required and ±KPV and ±bpc157 in VBI. I’m not at all familiar with ebselen and would like to learn more. Other mito peptides in my mind are MOTS-c and 5-amino-1mQ, but I am not well-informed/well-read enough yet to surmise their potential role. Hope someone with more experience can weigh in. PepPadawan, here. Teach me.
  June 27, 2021 at 7:40 pm #29840
  Matthew Taylor

  Member

  SSRP Certified

  Thank you for sharing the case Amy Jaramillo ( @amybodyscience-life).  Hopefully some SSRP fellow(s) can drop a knowledge bomb on this.

  June 28, 2021 at 10:33 am #29841
  Kristelle Reyes

  Member

  SSRP Staff

  Hello doctors @byurthgmail-com @drerikaeshealth-com @drhusaininterlinkedmd-com @drkriswyahoo-com , would love to have your inputs here. Thank you! ?

  June 29, 2021 at 2:39 pm #29842
  Abid Husain

  Participant

  SSRP Certified

  This is definitely a complicated case, and thank you for presenting it.  There are some multifaceted and elegant plans laid out.  I have limited experience with LL37 but I will share what I know.  Using LL37 is an art.  The standard 100mcg dosing is a good entry point and place to scale upwards.  LL37  also has immune modulating properties so it will help the infectious disease issues and and help modulate the inflammation but too much can cause a “die off” reaction.  Increase slowly and monitor symptoms.  Quecertin, vit D + C are great additions.  I have seen dosing up to 100mcg TID SQ.  Why IV delivery?

  Also, I’d be cautious with 5 Amino in this situation.  The increase in NAD production may precipitate further inflammatory response.

   

  July 10, 2021 at 9:35 pm #29843
  Cynthia Keller

  Member

  SSRP Certified

  Hi Amy-

  I mostly treat patients with complex intertwining infections, issues, etc…… and I can share with you that I think that my success lies in clearly asking at each treatment decision tree “what happened to cause this new dysregulation to this person right now”? And when I think that I know, I do an intervention asking their body “am I correct”?

  For example, I think that you should just assume that Lyme is a forever “guest” in the body for someone you have diagnosed with persistent Lyme (or TBD of any kind).  The goal will always be, to help the body be strong enough to keep it under control. (I call this, saying to the Lyme “you can be here,  but you have to sit down and shut up”.)

  And I should mention that persistent Lyme is (in my experience) often the underlying cause of the physical expression of illnesses like MS, ALS, Parkinson’s, etc…. which is why I am hoping that adding my thinking here might be useful in your considering this patient.

  Once I know that they have a TBD, I no longer spend time testing their blood work for it.

  Instead, if they (like your patient here) destabilize after they had been stable for some time, I ask “what happened to cause their body to take their foot-off the Lyme (where it was being held in quiescent behavior)?”

  CoVid would have been a great reason, but he had it in April and destabilized in Oct? In my experience, this isn’t the cause then, unless it started getting worse in April but they only complained to you about it in Oct.

  Unless this is the issue, then I would try sorting out any possible exposures, stressors, etc just before he started worsening in Oct.  Almost 100% of the time we can sort out the likely trigger (often it takes lots of questioning on my part however, since they often forget these things).   Likely culprits would be mold toxin/water damaged building exposures (CIRS), infections (like CoVid, EBV), other toxins (like medications, brown recluse spider bite, etc), or stress (death of spouse, completing their dissertation, divorce, etc).
  Once I have come up with a possible cause, I do treatment trials to see if I am correct. The resultant answer dictates my treatment plan.  For example, if it was a mold exposure, I do binders, O2, lumbrokinase, etc.  If it was stress, I support lifestyle changes, counseling, and likely will have to treat the Lyme back into remission (antibiotics, herbals, peptides).  If it were other toxins, I address these instead.

  I then use their response (to even a short treatment course) to let me know if I am correct or not. If so…. we further this line of treatment. If no change, then we ask again, “what else could have caused this”?

  So, the punchline of what I meant to be expressing with my long-winded response,  is that treatment of a patient of mine with persistent TBD who comes out of remission ….. depends 100% on the cause. And in some this “Lyme treatment” might be CSM and remediation of their home’s water damage, while in some it might be doing antibiotics again for a short course.

  I hope that hearing my step-wise thinking of how I support my patients in getting their Lyme to “sit down and shut-up again”, might spark a new treatment idea for your patient.

  Warmly,

  Cynthia

  July 12, 2021 at 4:28 pm #29844
  Suzanne F Turner, MD

  Member

  SSRP Certified

  https://sci-hub.se/10.1002/ibd.20334

  0.1 ug of KPV in 100uL of PBS was performed intravenously 3 times a week in mice for colitis

  July 19, 2021 at 1:15 pm #29846
  Kristelle Reyes

  Member

  SSRP Staff

  Hello @amybodyscience-life

  Just double checking that you saw the responses above. 🙂

  Thank you @andkeller2gmail-com @drhusaininterlinkedmd-com @drturnervinemedical-com !

  🙂

  January 14, 2022 at 5:57 pm #29847
  Kristelle Reyes

  Member

  SSRP Staff

  Claim your CME here: https://earnc.me/wjI0CY

• Author
  Posts