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And sorry-
I should have added that I have great response to Melanotan II as well in these patients.
-Cyn
Mary Ann-
sorry I am so late to respond to you here about this. Clearly primary care over the last year plus has keep us busier than even usual!
In short, I think that your friend should find a lyme literate MD (if he hasn’t already). I recommend (especially for a busy physician who doesn’t have time to mess around with trial and error) to use a combination of multiple complementing antibiotics. These combinations would need to include both intracellular and extra-cellular coverage, as well as coverage for all 3 forms of lyme (l-form, spirochete, and cyst) at the same time. The best way to handle this, is working with someone who has seen/treated/put into remission many patients with Lyme already.
One pearl I will state here (since I don’t see many use it, but it works great for my patients), is to use IM bicillin three times weekly IF neuro-lyme is the major complaint. This is a painful option, but is great at getting into the CSF and has IV equivalent effectiveness there for most Lyme sufferers …. And, for me, has kept the patients I have treated from needing to consider port placement.
(again this should be done only under the guidance of an experienced MD as there can be issues like brain swelling with die off around day 3, etc).Having said all of the above…. LL-37 is a wonderful adjunct for my patients with Lyme who have already been in remission, where the Lyme is trying to gain hold again, or as a support for the body’s own fight against these pesky and tricky pathogens with initial antibiotic treatments. I use 0.1ml daily subcutaneously, and I use it as long as needed. (I know if still needed by trialing off every month or so…. And seeing what happens.) I have used it for as long as a year in those who needed it, with excellent effect… most of the time limiting the need for any antibiotics to be restarted in these patients who had been in remission prior.
(I would add here, that of course ideally I wouldn’t have to use LL-37 for such a prolonged course. But if my options are; long term use WITH continued remission or short term use with regular episodes of non-functioning and low quality of life due to symptoms…. The choice of the less of these two evils is easy for me!)
Of course there are lots of natural treatment options (Lyme cocktail by biopure, or the Byron White remedies, to name two)….. however, as much as I like using non- Rx options whenever possible…. I have just not found these effective as initial treatment options for the severity of illness in the patients who find me.
And, as I have mentioned in my other posts on Lyme, I think it bears mentioning again…. That often Lyme treatment most importantly consists of removing barriers in that person that do not allow their immune system to be stronger than the Lyme. I am speaking here about mold toxins(CIRS), parasites, etc. This is not a little thing/point (this need to remove these hindering issues right away), as I have seen this make or break many patients ability to be successfully treated with even the of best protocols.
I hope that this helps.
warmly,
Cynthia
Hello Khanh
Unfortunately many of my medically complex patients end up exhibiting MCAS when they are dysregulated. For example, a patient with persistent TBD, who is exposed to mold, and then served with divorce papers quite possibly/likely will exhibit MCAS (or POTS, etc).
With MCAS, I don’t think that I have ever seen it as a primary diagnosis. I think of it more like someone’s hyper-reactivity “bucket” got full, and now they are reacting (and de-granulating) to everything. At this point, they have reactions to drinking their morning coffee, IV saline, temp changes and even being touched.
I address these patient’s symptoms coming from 3 directions at the same time:
A) I help keep them safe and calm their system with a Rx cocktail of singulair, xyzal, Pepcid, (used to also add Zantac), and gastrochrom (if foods are one of the triggers). There are also good supplements that can be added like NeuroProtek, Rx.
(side note, at the last Mastermind, Dr S talked about possibly adding histadine to help clear histamine. I have not yet had a chance to work with this, but I am looking forward to doing so. Gotta love his big-brain!!!)
B)I do things to generally stabilize their systems like LDN, LDA (low dose antigen therapy), TA1, BPC, (and I know I am forgetting important things here at the moment).
C)I also try to remove the triggers so that their system will stop over-reacting in the future (handle the underlying infection, remove gluten and any foods that don’t serve them well, of course heal the GI tract, handle mold exposures, remove toxic relationships, and stop the cat from sleeping on their pillow with them, etc).
These are my initial treatment plans, and honestly…. with continued work they all stabilize (however, this can sometimes take persistence and time. So I absolutely should have added “patience” to the treatment plan above!)
warmly,
Cynthia
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
How old is the boy?
Also, what specifically were you hoping to help improve next? I would use this answer to direct peptides to add first.
For me…. I ask these kids with complex health issues like these “if I had a magic wand, what three things (health/lifestyle wise) do you want?”
With kids, especially, if you don’t make changes in the things they want…. they often get treatment fatigue, etc. Said another way, it doesn’t matter really what I think should be made better next, instead…. if you want the kid/teen to “buy into” treatment, consider focusing on what they wish would change to make their lives more rich/full/easy/social/better first.So, it would be easiest to know what to start peptide wise …. once we know what this young man wants.
I have suggestions of next steps depending on the above answer… and I’m happy to help if you share his goals.
🙂
Cynthia
Hey Aaron-
While I am not a TB-4 expert (I’ll leave this part of the answer to others), I am a kid expert (pediatrician of 22 years). And girls stop growing 2 years after menarche. So I would expect this teen’s growth plates to be closed already. You could of course, if you wanted to be absolutely sure, get an X-ray or ask her pediatrician for her growth chart to confirm this. But at three years…. You should be good.
-Cynthia
I am not sure that this will work for everyone, but in more than a handful of our patients who ended up with persistent nausea and insomnia after CoVid… we have seen success correcting this with the homeopathic Gelsemium sempervirens (either 6c or 30c).
It usually takes more than a single dose for lasting relief. We sometimes see worsening sleep X 1 night, and then about 2 days later, relief. It often responds very well, but symptoms return after using only a single dose. We usually try it once, and if it works well….then we have them try 5 tablets 2 times daily for 3-5 days and then PRN. Symptoms seem to come back periodically (maybe weekly), and again respond to the homeopathic for another few weeks… and then gone.
I cannot promise it would also work for your patient, BUT…. safe and inexpensive.
Hope this helps,
Cynthia
While this is more about what to do after, I thought that I might share it here.
I have 17 employees, 15 of which have gotten the CoVid vaccine (mRNA type) without major issues. I specialize in complex medical issues like chronic Lyme, Mast cell activation issues, and CIRS. And as such, I attract staff who deal with these issues themselves (who want to now support others or have the patience to support patients with these issues).
So first off, I was delighted that when we “tried out” the vaccine on ourselves first before offering it to our patients (we also have a general practice/wellness clinic) that it went well.
One thing I did find, however, was that many (maybe as high as 1/3) of my staff got significant depression afterward. It took a while for me to link the two (vaccine and mood dip) since there are so many reasons to feel depressed after a year of caring for families with CoVid, etc. When I tried to figure out how to manage/address this… my nurse said that “it must be how PANDAS patients feel where they have anxiety for what feels like no reason, only now for me, it is depression”. That made something “click” for me. Since in PANDAS.. it is an immune response (a confused antibody to strep attacking the brain) and I use homeopathic Strep (1M) to handle this….. I decided to try a homeopathic in this case thinking that my nurse was describing an immune response to a component of CoVid that was now confused and attacking the brain. So I thought.. “what is good for deep depression or grief”… and tried Ignatia 30c (5 “balls”). And WOW… within 2 hours she was back to baseline. I then tried it on others, and got the same result. All in all, I think that there were 5-6 staff members who “needed it”, and maybe 5 others who when trying it… felt a change (even if not really thinking that they were feeling depressed).
Then when maybe 3-4 of my staff reported grouchiness and short-temperedness also after the vaccine (instead of deep sorrowful depression), I tried Lyssin (rabies) 1M (since that was dilution that I had) .. again 5 “balls”…. and again, there was the resolution of symptoms within a few hours.
Since then, when my friends and family get the vaccine… and I ask them “how are you doing? Any side effects?”; when they tell me “no, I am doing fine”….. I say “great. But if you seem like you feel more depressed, pls let me know”. About 1/2 of the time, they say “oh well, I didn’t even think to correlate it, but I have been very weepy the last few days although I thought that it was just due to X”. I have these people try the Ignatia homeopathic with good results.
I hope this helps some of your patients too!
Cynthia
