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Also, on the lyme front. It is possible to improve MS or Parkinson’s by appropriately handling their underlying chronic lyme.
But there are a few caveats…
a)Some people have chronic Lyme AND Parkinson’s and in these patients… the lyme symptoms get better but maybe not the Parkinsonian ones.
b)Some people have parkinsonian symptoms related to lyme… THESE people are easier to have a big impact in by treating their lyme.
c)Some people have Parkinson’s and quiescent lyme picked up on test. These people would likely not be helped with lyme treatment significantly.
And the problem is… I suspect that many of the above patients look similar to most providers. Meaning, be careful what you promise the patient as far as the impact of treatment. Since treating lyme in the above 3 scenarios would likely have different outcomes from treatment.
So my advice would be… have someone super savvy in chronic tick-borne disease evaluate and help you decide how much lyme is an issue.
And then yes… go to Mike’s link about for the Parkinson’s part of this question.
Warmly,
Cynthia
Hi Amanda!!
Well, I will speak up at least about the lyme part. And I think that sorting out if this is actually at play in her matters, since it would greatly alter treatment.
I do not think that I have ever treated someone with chronic lyme with JUST bilateral knee pain. Usually it has systemic involvement, and usually THIS is the biggest hurtle to having a happy life. So, if you tell me she is happy, thinking clearly, mood fine… but limping… then I would focus on non-lyme things. But if she also has overwhelming fatigue and brain fog, THEN I would get her to someone who absolutely knows what they are doing with lyme.
Otherwise, please tell me that one of the MDs was a rheumatologist. Or at least that a savvy pediatric orthopedic doc stated why he didn’t think that this could be something like JRA and why she didn’t need a rheumatologic referral.
Let me know about the other symptoms she has…..
🙂
Cynthia
PS see you in Oct?
Ok-
As you and I discussed (so I know you know, but still feel I have to post it here)…..pretty much 100% of kids get strep in childhood. And most of those doesn’t have PANDAS. The important part of the story would be-he was normal
-he got strep
-then crazy anxiety/OCD/behavior change, etc.It is hard when parents don’t remember…. But If he was “always an anxious boy”, not as good a story.
Most of my patients with anxiety and OCD are well treated by combinations of SSRI, therapy and specialized EBT for OCD. I know he has done therapy and meds, maybe also consider looking for a center like “the Evidenced Based Anxiety Treatment Center of Seattle”. They have been very helpful for my hardest to treat patients with OCD. Oh, and I also have been using Neurofeedback in my clinics for 12 years… with great success.
I usually start with the above unless the story is more like:
-he was fine
-moved into a moldy house (got strep, etc)
-anxiety and OCD started.
These above make me think “inflammatory cause”.But yes when you do draw, you could add ASO, streptozyme, DNAse B, CRP and ESR. (Often these are not positive in PANDAS, however if they were positive we would have something more to talk about).
Keep me posted!
Cynthia
Hey Eric!
So hearing this patient’s story… I am assuming that you are wanting to focus on the mood issue, and that this is what is most affecting his life.
a)I am not sure what to say about the EBV titers, since most young adults I know have had mono. And many kids have such mild cases that they swear they have never had mono, despite showing immunity to EBV. So, unless you tell me his titers remain super high for a long time after illness (>750 IgM and IgG) plus maybe some EA titers persisting…. I’m not too excited about this. And if EBV were an issue for him, I would expect to hear more about fatigue (not usually primary mood issues).
b)Mold exposure however can ABSOLUTELY lead to significant mood issues. I have seen happy people become frankly suicidal after a significant exposure (this would have to be in the primed or genetically susceptible human).
About the TGF-beta. Yes this can point one towards the possibility of a mold issue. However, with things like CIRS, or chronic infections, etc…. Looking at the labs, it is more as if “when I look at all of this data together, it points towards this likely being an issue”. I say this, since these labs are not specific for mold exposure.
I think that it would be a good idea to further evaluate this by
-asking history about possible water damage building exposure. And if this history isn’t looking interesting, try to see if you can figure out when symptoms started… trying to link symptoms time-wise to a change in venue, etc. I would also expect to hear symptoms of fatigue and brain fog as well.
-order mold labs that can easily be done at labcorp (without running labs that are hard to order initially).
In addition to your TGF-beta …MMP-9, MSH, VEGF. You can also look at things like ADH/osm. If all of these are off… then can get more serious about testing (will be send outs, etc)If you really think it is mold (either from the story or from the labs…) then the biggest intervention is to get them out of this situation.
Meaning if you have $100 to spend on his care, spend all of it on getting him out of here there, before spending on treatments (I say this since even if treating him well… I think a day in a mold toxin laden environment makes someone with CIRS take more steps back than you can move them forward with treatments).After getting him “out” I would focus treatment on:
-removal of toxins from his body (too big a topic until you know this is what is needed for this patient… but in short…. Could use CSM, Welchol, GI detox, other binders etc).
and
-calming the immune “fire”. In short this is an awesome place for TA1. Also, remember how helpful KPV can be for people recovering from mold exposures. (VIP can be very important in CIRS recovery. But not until the end of treatment, so not yet).
and
-repairing the damage done. Glia (plasmalogens) are awesome for helping repair the brain after this kind of mood change after mold.
and
-after all of the above is handled, if still with significant mood issues related to CIRS, then this is a perfect place for Ketamine to reset things (and I mean here, as mentioned in my post about a ketamine question prior … to be done IV by an anesthesiologist). Treatment course is usually 6 treatments or the like (as long as you have already handed the above. If someone needs repeated courses, then I suspect that the damage hasn’t been stopped/healed, etc yet ).
I hope hearing some of the above helps you decide some next steps for this young man. If you get more data on him, pls post it here and I’m happy to give more input.
Side note- if his symptoms came on suddenly after an illness with a sore throat…. I would certainly add PANDAS to your DDx to explore further. This would usually have started years back (but you did say “long standing”.). Anxiety and OCD from PANDAS usually has an irrational tone to their fears.
Hello-
From this story, I suspect that the weight issue (and the insomnia) is due to mycotoxins.
Remember that the body is so smart, and when exposed to more mycotoxins than it can handle, it creates more fat in the body to be able to store these toxins as safely as possible (better to hide those toxins in fat cells than having them move into the fat in the brain).
This means that:
a)while she was loosing weight she was freeing and mobilizing these stored mycotoxins. (Making the insomnia worse again)
and
b)once her body realized that she wasn’t able to handle safely the toxins that you had mobilized already… it was refusing to lose more weight and mobilizing more.
So next thoughts on my part:
-mold toxin binding (however you usually like doing this best… GI detox, Welchol, CSM, etc)
-address the inflammation in the brain due to the “fire” created there by the mold exposure (TA1, KPV/BPC, TB4, melanotan II). Side note here… TB4 directly addresses things we follow in CIRS like TGFB, VEGF, etc. And Melanontan II has MSH effects (also of course, a very important arena of the nasty affects that Mycotoxins have on the brain).
I would personally think of the above two steps first. And I bet her insomnia would improve (brain could stop being hyper-vigilant) and her weight loss might resume.
-Cynthia
In my mind, Betsy (Yurth) is the spermidine-goddess (as she is the one who I first heard educate about its uses, etc…. I know she uses it… and she even got one of the companies to give free samples to all of us at one of the earlier Masterminds).
I know she must know the best sources.
-Cynthia
I just wanted to throw in the reminder as well to ask her what her biggest complaint is. Meaning, “what of what she is experiencing is the biggest hinderance to her daily quality of life?”
I have found over and over, that if I make sure that this is one of the first issues corrected, they are more “all in” for all of the changes that will be needed of them (lifestyle wise, medication use, etc). This also gives them back some hope.
And at times I have been shocked to hear that what affects their life the most, is not that what I was most worried about medically, nor what I guessed what they would have said.
And I agree with Robin as well that her case says “support her emotionally” to me.
And lastly, with two episodes of MRSA complications, consider swabbing nares to make sure that she isn’t colonized. And if she is, correct this before her next intervention which breaks the skin.
-Cynthia
Hey Flip-
For me, when there isn’t clear data about the safety of the use of something while breastfeeding (like in Dr Hales classic book ), then I ask myself …
-would I give this medication to the baby on purpose?
-how important is it to this mom to use this right now?
For the drugs you mentioned:
1)I have happily given BPC to lots of infants for gut healing/feeding issues. So no problem there for me.
2)TB4 is a no-go for me. There were some studies of use in open heart surgery in kids under one…. But no long term discussion of how this affected their growth. And really, I don’t want to change tissue regeneration in healthy newborns (things go at the speed they should).
c)CJC/IP: again, I wouldn’t want to change the growth trajectory of infants.
d)topical cream for scars: I would have a lot less to worry about with this. But again, I would ask… esp when using something non-mainstream in a nursing mom… “do I need to use it”? (This is a more CYA thing. Did you know that you can be sued as late as 2 years after the child turns 18 for perceived malpractice leading to damage in pediatrics. So this would be 20 years from now. Just to make sure you think about how much you want to use something in a nursing mom).
hope this helps.
cynthia
Eric ( @ejfete71gmail-com)-
I was thinking about you and your eyes/vision again.
Are you getting better?!??I hope so!
-Cynthia
I just wanted to add here, that if a patient tells me that they got worse on something, I usually have them stop it … even if I didn’t think the treatment could/should/would (or even did) cause the issue.
I would usually explain that this isn’t what I usually see (or have ever seen), however… that I trust their body to tell us what is/isn’t right for it, and that we should listen.
Especially right now, anything that worsens depression (or even seems to worsen depression in the patient’s mind) is likely not the thing to be using.I think that using the model above of helping empower the patient to help determine what is/isn’t right for them will go a long way to help keep them (and us/our licenses) safe, especially when we are using newer and less widely understood treatment modalities.
-Cynthia
Well first off, vitiligo is an autoimmune disorder…. And so I would start with what I usually do with all autoimmune issues:
A)remove any obvious “stoking” to the autoimmune “fire” (like living in a water damaged home as an example), as I usually see something like mycotoxins as able to make things worse faster than I can work to make things better. Said another way, even if I am doing good work with a patient….. we are still usually not making forward progress if their immune system is still being inappropriately over-stimulated.
B)heal the gut!!! (you knew I was going to say that!)
Remove foods that make them feel worse (and those they don’t realize are doing this like GMO/glyphosate, and pesticide laden foods), BPC-157 (+KPV would be great), butyrate, NO constipation (as this alone causes colonic inflammation), consider betaine HCL (for food digestion as opposed to letting food rot/ferment), and prebiotics (FOS, GOS), for starters.
C)And TA1 would likely be my first injectable peptide.
I would measure the lesions, and take pictures. And I would remember (and remind the patient), that our goal is to stop the progression of the pigment changes.
(Of course WE also know that the biggest goal is to stop the underlying immune dysregulation that will likely show itself in more health altering ways in the future than just pigment changes if allowed to go unchecked.)As for using Melanotan II in this setting, that would make me nervous… as I cannot promise which skin will choose to darken (as you mentioned). Maybe someone else has experience using it in this way successfully? But I would not use that… and instead would start as I mentioned above.
Hope this helps.
Warmly, Cynthia
I would also absolutely recheck IGF-1, and likely recheck prolactin again at that time (even though it was normal initially). For me, I would close this issue (by at least knowing that it isn’t escalating, and having a stated plan for future follow up if still high) before starting peptides.
I think this is partly just the right thing to do, but I’m mentioning it here specifically as a CYA thing (especially when using something off-label/non-traditional, etc).
Cynthia
Anne-
I’m sorry to hear that you are being challenged in this way, but I am glad that you are here.
I’m sorry but none of my patients have had ALS, and so I will have to defer to my ALS-experienced colleagues like Mitch (above), and Amy (who I hope will weigh in.)
Warmly, Cynthia
Hello-
a quick reminder that a handful of vitamins (esp fat soluble ones, and Vit C) are required for tissue integrity and healing. Someone with a history of chronic GI inflammation is unlikely to have had good absorption of these vitamins for some time. If her skin lesions are having a hard time healing, one useful intervention can be making sure she gets replete with things like Vit A, Vit. D, Vit E, Vit K and Vit C.
-cynthia
