Lyme neuroborelliosis or how do you detox when your emunctor

Lyme neuroborelliosis or how do you detox when your emunctories are blocked...

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Anne Van Couvering
Message 1 of 5 , Mar 11, 2014
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I have posted about this case before, but have been getting nowhere...

65 yo f with 30 year history of Lyme and pervasive neuroborelliosis.

She has atonic constipation - cannot have a bowel movement without prescription meds. She has neurogenic bladder, with incomplete voiding and consequent frequent UTIs. She has burning mouth syndrome and can only eat certain very specific foods. She has chronic pancreatitis with elevated amylase, normal lipase. Chief complaints are constant abdominal pain, weight loss, fatigue and leg pain.

She has been treated in the past with IV antibiotics for several years without resolving the Lyme. She is extremely reluctant to go there again. She's sees Dr Perlmutter for neurology while she's in Florida and he's given her glutathione IV and IM - no change in symptoms.

I'm a little stuck here. Don't want to treat Lyme without her being able to get things out of her system - she is quite weak. She can hardly eat anything, and is losing weight, so I'm reluctant to change her diet, although we did do a GF/DF trial with a meal replacement shake which she hated but gamely choked down - no change in symptoms, and increased weight loss, so we stopped.

Maybe saunas and IV nutrients would be good for her, but I don't have the one and am not allowed to do the other. If people think they would be really helpful, I'll try to figure out how to get them for her. I have tried gentle supportive therapies, but they're not touching the pain. I wanted to send her to the integrative Lyme center in the city but she's been there/done that. I could use herbs and or UNDAS/drainage but I am worried about her herxing without being able to eliminate. And yet, if we don't get after the Lyme, I don't think she can get well.

She has a supportive partner, and they are willing to try most anything, although they're tired of chasing straws. Her quality of life is hugely impacted and she's losing her will.

I would love insight/ideas here...

Thank you!

Anne

"Whosoever undertakes to set himself up as a judge of Truth and Knowledge is shipwrecked by the laughter of the gods."
--Albert Einstein


Stacey Raffety ND LAc
Message 2 of 5 , Mar 11, 2014
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Hi Ann,
I feel motivated to attempt to write back.  I am tired but want to reach out to you.

These are really difficult patients ,I know I have a clinic full of them.  I would suggest you start from the top.  That I mean, ask what is holding her back.  Look at body systems and start there.  If her GI tract is not working and she is suffering from malnutrition and auto intoxication that is  a a very powerful place to start.  I find with these patients the Pekana drainage is very gentle yet deeply healing.  My patients do not herx with these remedies if you use them properly .  Focus on what lyme has brought forth and not the infection called lyme.  I would use lyme herbal tinctures at this juncture of her treatment.  No worries about not treating lyme if you are using herbs, they are just as strong as antibiotics if used properly. It is all about peeling back the layers bit by bit with these folks.  It takes time, and it feels like too much time.
It sounds to me like she is suffering from long term complications from lyme disease.  I believe in these cases your goal should be to accomplish as much " functionality"  as possible and not cure. She may have some long term residual consequences of lyme disease, not everything goes away.
She  needs support in digestion, elimination. Get her pooping!!  Pain management is another whole topic.  I have ides but am too tired to talk about that right now.
Diet can be huge for these folks.  Hypoallergenic diets, gluten free, allergy free is essential.  Do not over look it.
  Emotional well being can be complicated.  Only she can decide to keep going with treatment.  I tell my patient I personally never give up hope and will keep working diligently to get them functional.  They have to decide if they want to keep being treated.  I do not let them make me be responsible for making everything all better.  Knowing that some one is in their corner dedicated to helping them is huge and enough in my mind.  I care deeply for my patients and they know it. The rest is up to them.  I have become skilled in non violent communication, counseling,  inter personal neuro biology to help counsel these folks.  Lyme disease is tough really really tough. ( Both for the patient and those who choose to treat it).  We all need encouragement and support.

I may be really rambling in this email as I am exhausted , yes from a busy day of treating you guessed it  Lyme disease.  Keep up the good work for these very complicated patients and good  luck.  Hope this helps some.


Dr.Stacey Raffety
Tigard Holistic Health Clinic
Tigard Or



Anne Van Couvering
Message 3 of 5 , Mar 11, 2014
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Stacey -

thank you so much for reaching out when you are so tired.  Fortunately for me, the majority of my Lyme patients right now are much more vital than this woman - I can't imagine a practice full of ones as sick as she is.  They are lucky to have you.

Thank you also for the specifics about using Pekanas.  I have been scared to do "drainage" or "detox" because of the lack of functional emunctories.  I have tried everything I know to get her bowels moving.  It seems like she has what one doctor called "Bell's Palsy of the intestines".  No reflex, no peristalsis, no nothing.  She takes a pill that turns it all liquid and it falls out.  I don't know how to fix that except to treat the Lyme.  I agree with you, I think she will have long term consequences of Lyme that simply need to be managed, but I don't think she can go on like this without something giving, and I would like to prevent that.

I started with cleaning up her diet, but she didn't notice a change and was losing weight and really didn't want to continue, so I backed down.  I don't think she really sees all her problems as Lyme related - I think she sees each of them separately, and there's some education that needs to happen.    I didn't really understand this until recently, because it is so obviously Lyme to me that I thought it would be to her.  But her conventional doctors are treating everything as if it were separate, and so she is thinking that way.

With the recent thread on Candida and burning tongue syndrome I am thinking along that direction - I have been giving her high dose probiotics (HMF Replete), but I'm wondering now if there's SIBO involved too.  Abdominal pain is worse after antibiotics, and she has been taking multiple courses for the chronic UTIs caused by neurogenic bladder.  I tried the Pekana bladder protocol on her at the last visit and am giving her mannose, to see if we can control those UTIs and keep her of the antibiotics.  WE'll see how that goes.

When and if you have the time to give me ideas about getting nutrition into her and pain out of her, I would be extremely grateful, especially that abdominal pain and pancreatitis   No push, she is in Florida for a month, and I won't see her again until she gets back, but I saw her just before she left and she's on my mind - for herself, and also because I'm still learning, and I feel if I can understand how to work with her, I'll be able to help more people.

Thank you again for your email.  Even if you don't have time or energy to go further t=with this, it is very helpful to know that I won't be making her worse by giving her Pekanas when she can't eliminate.

All the best.
Sleep well.

Anne



Anne Van Couvering, ND, LMT, CNS


"It's only work if you'd rather be doing something else."  - Abigail Van Buren (Dear Abby)


Jill Evenson, ND
Message 4 of 5 , Mar 12, 2014
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Is there anyone local doing IVs you can refer to? She needs nutrients. I realize you're in an unlicensed state, but there are plenty of A4M holistic MDs out there learning about Myers at the minimum.

I'd use constitutional hydros with sine wave, daily for as long as she can afford it. She has atonia due to the neurological disruption of the Borrelia. You have to be her mesenteric nervous system for her.

She may need to follow the constitutional with an enema. Seems even a daily enema would be better than a chemically induced stool or auto-intoxication.

These are tough cases, sick for so long. I'm happy to brainstorm with you about this case. I don't know much but have some seminars and a few years treating under my belt. 608.751.3895.

Jill Evenson, ND
Wisconsin


k_mcelveen
Message 5 of 5 , Mar 12, 2014
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I echo Dr. Raffety's response (which was excellent and impressive if that was typed "tired!").

Also, I wouldn't hesitate with the UNDAs at all. They are exactly what you need to open the emunctories. You may need to go slow at first, but if you prescribe them appropriately, they should decrease any risk of Herx. She's not going to Herx until you start killing the bugs, she may get an aggravation from the UNDAs, but it should be minimal compared to everything she's been through. Sauna may be too much for her, but hydros she can do at home if you can't do them in the office. Also epsom salt baths, dry skin brushing, all our lovely basic treatment guidelines that also help promote elimination and detox.

~Kristen McElveen, ND
Springvale, ME
kristenmcelveennd.com