HealingWell
Search Close Search
☰

Stuck

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/21/2019 3:54 PM (GMT 0)
Hi, Lyme folks,

I'm looking for advice, commiseration, and encouragement.

How do you decide when to push through serious herx symptoms (cardiac abnormalities, brain swelling, gastroparesis, etc.) and when to back off treatment? How do you push through safely without ongoing in-person monitoring by a knowledgeable caregiver?

How do you handle the paradox of not being well enough to handle treatment? (I'm looking for something more than a suggestion to detox here.)

When the exertion of a medical appointment (even in a wheelchair) exhausts you and causes symptom flares for a week or more, how do you get better when you can't access care by physically going to appointments? And when your immune system is so fragile that exposure to the typical germs of a public place is a huge risk?

I know healing from Lyme (when it occurs) happens differently for everyone. I have addressed MCAS, mold, metals, chronic viruses, leaky gut, parasites, detox, nutrition, EMF, reconditioning, homeopathy, herbs, hormone systems, ANS and mind-body work, reconditioning and movement, lectins, acupuncture, energy work, flower essences, infrared light treatments, kinesiology, Neurological Integration System, bioresonance devices, meditation, and mental health. I am open to everything, no matter how fringe. What am I missing?

I continue to deteriorate despite my best efforts. I don't know how to gain a foothold. My providers are at a loss, and at this point they seem frustrated by me. (I have seen 45 medical practitioners about this stuff, more than a dozen of whom are Lyme-literate.) Where do you start when every body system is involved, and a good day is one in which you can walk to the bathroom without assistance and keep food down? What's the right treatment then?

Thanks for any thoughts you can offer. I know I'm not the only one who has been in this situation ... but it's easy to feel so isolated! I just had to cancel an appointment I'd waited for months to get - one that could help me with a really disabling aspect of my illness - because I spent yesterday at the ER for a different issue and wore myself out too much to function today. This has become a trigger for me: How do you heal from a sickness when you can't manage the treatment?
Posted 2/21/2019 4:58 PM (GMT 0)
Reading the Bible, praying and fasting

to make my appointments I would take Modafinil

write a journel everyday. what time you woke up, your weight, how was your sleep, how are your symptoms, what medicines/herbs you take, what you think is working ('model'), what you are greatful for, your goals.

set ONE goal or ONE thing per day, do it, the rest just forget about

concentrate on detoxing, cycling between fasting and low/zero carb, taking probiotics and fiber, cycling between different antibiotics until they stop working, then go back, and trying herbs incrementally and cycling between them

NAC for biofilm. Oil of Oregano for gut mold. Stevia for biofilm. Cat's Claw with ABX. IV Penicillin. Ivermectin paste. Cloves, Teasel, Garlic extract with allicin, Cinnamon, Tumeric, Japanese Knotweed, Salt+Iodine+Potassium-Selenium-Zinc, Spirulina tablets. I have a huge shelf with over 100+ bottles and I have a box of empty pills.

go back to your memories and remember what worked, write it down, cycle back to that protocol. keep a journal for that time, and then switch to something else (if all else fails fast/detox with herbs) remember that working protocol and switch back to it and try to discover new combinations and cycle between them. it is not uncommon for nothing to work for 9-18 months then all of the sudden realize you made progress. I thought cat's claw didn't do anything but it was working for me
Posted 2/21/2019 6:26 PM (GMT 0)
Sara,

Wow! I am so sorry for the level of debilitation you suffer and the situation you are in. I am not in a wheelchair and don’t suffer debilitating exhaustion, but I can still relate to most of what you said.

I have really bad chemical and mold sensitivities, which seriously limits me in my choices. I also suffer a lot of toxin pain pretty much anywhere in my body, making me feel just like you said - how do you handle not being well enough to handle treatment? I’d like an answer for that myself. The pain and suffering I endure and the constant inflammation have worn my systems down and mentally and emotionally made me fragile.

Have you considered Hansa?
Posted 2/21/2019 8:43 PM (GMT 0)
Some people do well with biomats, but those are $$$ investment which is always risky for a thing we aren't sure will help us.

Other ideas... hmmm, have you already done a lot of different herbal protocols? are there any herbal therapies you haven't tried yet that you could titrate slowly?

Couple other things: rife (another risky investment for something one doesn't know will work in their situation), bvt (which I'd be leery of trying if I were given issues with MCAS and various sensitivities). I imagine it is not easy to access in France but maybe IVIG therapy would be something to look into?
Posted 2/22/2019 1:41 PM (GMT 0)
There is a movie called "Root Cause" you may want to watch.
I believe its on amazon
Posted 2/22/2019 3:07 PM (GMT 0)
I'm sorry you're going through this. sad I definitely back off treatment when there is brain swelling.

If I couldn't tolerate treatment anymore, I would try an AmpCoil. I don't trust it fully (although I've tested it out), but I keep it in mind just in case. That's because I've watched some local people improve greatly with it, including the sickest girl any of us know. She went from struggling to form a coherent sentence to talking fluently in three months. I don't like that people get paid to demonstrate it, and I worry about cancer possibilities, but I've seen good results.

I hope you find something you can tolerate soon!
Posted 2/22/2019 3:36 PM (GMT 0)
I have a headache this morning so sorry if I mention something you've already covered.

I would say explore dental work. Do you have any root canals, fillings, crowns, wisdom teeth removal? I recently had a crown replaced which was indicated in biofeedback scan. Surprisingly, my buzzing in my feet has been lessened to almost zip. I have also been taking sublingual b12 2-3x a week so it could be helping some as well. I've taken it in the past and hadn't noticed an improvement though.

Diet? Have you done an elimination diet? Super hard but can be very enlightening.

Chemical sensitivities? HUGE issue for me. It is the main driver in the numbness I get along with leg weakness and then fatigue after big exposures (like a furniture store). What helped me figure this out what LDI/LDA. Which is something you may want to explore since it is easy - sublingual dose. I went through all the doses for Borrelia and had no improvement and have worked through some for bartonella. I'm currently titrating through yeast. But by far the MOST improvement was for chemicals (LDA for food/chemicals/environmentals). I'm not sure if the food portion is fully working yet but I did eat some hummus without getting read and itchy (sesame allergy). The only issue is this process takes FOREVER to work through. I've been at it off and on since 2015. It takes patience.
Posted 2/22/2019 4:05 PM (GMT 0)
Thanks, folks! Keep the ideas coming.

Pharmaceutical antibiotics - I'm allergic to two major families of them and the rest make me vomit consistently for the duration. These are not an option for me.

Hansa - Definitely would like to learn more. The center representatives are vague, and no one seems to be allowed to talk about their experience there, so I find it very hard to go without knowing what they do. Anyone have more insights? Also interested in Sponagle and other treatment centers but reluctant for the same reason - they're so secretive.

BVT - Can't because of MCAS. But I know two people who were entirely better very fast with BVT, as well as one who noticed no difference. Two out of three ain't bad. But I encourage them to support the imperiled bee community in any way they can!

IVIG - Would like to learn more, as I hear mostly about disappointing results.

Biomats - I tried these, saw no improvement.

Herbal protocols - I have tried BW and Buhner, and parts of Cowden, and mixed and matched other herbs along the way. I have been on various herbal protocols for three years. I love herbalism and stand behind it, but I need something else in addition to stop the decline. Makes me suspect that Lyme-related infections are no longer my biggest issues.

Rife - This is one aspect of an AmpCoil.

AmpCoil - I have one. It works incredibly well, and everything you hear about it is true. But even on its lowest settings, it works too well for me! I spent $7000 on this device that drastically changed the lives of dozens of people I've talked to personally (not through the company) and as with so many things I seem to be a serious outlier. People in dire health get better and have major turnarounds, usually within three months. It's supposed to be a wonderful option for the very ill and very sensitive, which is why I bought one. The microbe-killing settings just produce herxes my body can't handle right now, and electrical sensitivity is an issue as well. They're working on a sensitivity update that I hope will help me be able to use it safely.

Diet - Diet is so important, and yes, I have done elimination diets and various other dietary tweaks and overhauls. I'm vegan and gluten-free, and I'm finding that a low-histamine diet helps with MCAS as well.

LDI for chemical sensitivities - I will look into this!

Root Cause - This is the dental work documentary? I have a dodgy old root canal that I'm having removed in two weeks. Hoping that helps on some level. Never thought I'd be a 36yo with a denture in a wheelchair, but we do what we have to do!

Thanks, everyone. I appreciate the ideas and replies.
Posted 2/22/2019 5:42 PM (GMT 0)
Sandyfeet,

I live in Boston. I will look for the lists of places to rent with low environmental irritants and molds. Your experience sounds similar to mine - sensitive to treatments, holistic approach, etc. Thank you for your support and kind words.

I did as you describe last summer and it went well - not treating, just establishing a baseline and backing off all but the gentlest things. It went quite well (better than I'd felt in two years of treatment) until I got a virus in October that caused myositis, freaked out my autonomic nervous system, allowed infections to take over, and made me sicker than ever. Four months since the virus, and I'm still confined to my room all day. I want to try things that might help, at this point, but maybe I'm not being patient enough.
Posted 2/22/2019 6:58 PM (GMT 0)
Here are some links on LDI/LDA for you:

https://www.treatlyme.net/guide/ldi-bring-on-the-regulators
http://www.betterhealthguy.com/ldi
https://www.globalimmunotherapy.com/about-ldi

I would probably not use LDI primarily for Lyme. Again, I had no response to LDI for lyme. But if you have allergies/sensitivities, I would consider. I use Dr. V in Hawaii. The initial consult (skype) was expensive but shipment of doses (every 2-3 months usually) is about $165.

Also, not sure if you'll find this useful, but I was also exploring dental angle - trying to figure out why I'm sensitive to everything and keep developing new allergies. There is a popular biological dentist in TX (featured in root cause) that you can send updated pano film to and he will evaluate and give treatment recommendation at no cost. I need a new pano, but plan to send it to them to make sure I don't have cavitations from wisdom teeth removal.

http://www.betterhealthguy.com/episode51
Posted 2/22/2019 7:08 PM (GMT 0)

saraeli said...

BVT - Can't because of MCAS. But I know two people who were entirely better very fast with BVT, as well as one who noticed no difference. Two out of three ain't bad. But I encourage them to support the imperiled bee community in any way they can!

Regarding BVT. There are a lot of people that practice apitherapy that have MCAS. In fact, Ellie Lobel believes most people with Lyme have it at one stage or another of their illness. It wouldn't hurt to join the group and search the page for posts talking about MCAS.
Posted 2/22/2019 8:05 PM (GMT 0)
Wow, you've tried so much. One little virus can set us back so far -- so frustrating. I'm really hopeful that removing the old root canal will make a big difference for you.

I'm glad to hear your thoughts on the AmpCoil. Are even the detox settings too much? One local woman had to stick with those for awhile before being able to do any killing.
Posted 2/22/2019 8:18 PM (GMT 0)
Also, what do you do for the MCAS? Do you take allergy medicines regularly?

And this might sound silly, but have you tried elderberry to help fight viruses? I've been taking a lot of elderberry and vitamin C to fight a cold this week, and it's helping a lot.
Posted 2/22/2019 8:37 PM (GMT 0)
Sara,

Did you have any lab tests to specifically identify the virus? Have you had any lab tests post-virus to check IGG/IGM antibodies for various viruses and bacterial infections? If you haven’t, that would be a good place to start.

If you can identify the virus and/or bacteria that seems to be most problematic, you can tailor a treatment plan for it. It’s possible some anti-viral meds may help some or one of Buhner’s anti-viral protocols or anti-viral supplements.

I will say that much I have read points to viruses and/or mycoplasma when it comes to debilitating fatigue like you report. I would definitely test for those and address them based on lab results.
Posted 2/22/2019 9:03 PM (GMT 0)

saraeli said...

Hansa - Definitely would like to learn more. The center representatives are vague, and no one seems to be allowed to talk about their experience there, so I find it very hard to go without knowing what they do. Anyone have more insights? Also interested in Sponagle and other treatment centers but reluctant for the same reason - they're so secretive.

Saraeli,

Here’s a Hansa post from 2016. If you search Hansa, you will find more posts. There is also a post on the first page right now. Looks like you’re right about it being “secretive” based on the most recent comments.

https://www.healingwell.com/community/default.aspx?f=30&m=3564964

And another from 2017:

https://www.healingwell.com/community/default.aspx?f=30&m=3777592

Financial Information:

https://www.healingwell.com/community/default.aspx?f=30&m=4081194
Posted 2/22/2019 9:21 PM (GMT 0)
I remember reading about dr Judy Mikotvits' work on the endogenous retroviruses, there is a book she wrote called Plague. Dr K claims cistus incanus tea treats these viruses, specifically cistus from Sardegna. I tried cistus, but from Albania and Crete, not Sardinia, so I can't tell, and there's no way to determine whether the tea has helped in my treatment or not..
Here's an article I just found, it also mentions mcas https://alisonvickery.com.au/retroviruses/

I just watched Root Cause, dear God... I know a few people around me that need to watch it asap. It's so odd that the documentary scores only 4/10 on imdb?

Sandyfeet, I looked up those lists but unfortunately can't find them, I am very curious to see what areas in the world are considered safe regarding mold.
Posted 2/23/2019 6:58 AM (GMT 0)
I'm watching Dr. Phillip and Dana Parish's Facebook Live video from Feb. 22 and he briefly discusses the issue of extreme herxing in some patients. One suggestion he has is to use binders. It's somewhere around minute 26. I'll try to add the link later.
Posted 2/23/2019 12:07 PM (GMT 0)
Thanks Sandyfeet, very interesting website!
I see on facebook someone recommends Croatia, yes, mediterranean DRY climate. Not everywhere in mediterranean is dry, many places are humid.
Posted 2/23/2019 2:12 PM (GMT 0)
Thanks, everyone. There's some good food for thought here, and I really appreciate everyone's time. I know we all have plenty on our minds!

AmpCoil - I used the supportive settings (PEMF) for nine months before even trying one with "detox codes" ("detox codes" or "cleanse journeys" in AmpCoil parlance mean the settings that have rife-like frequencies designed to kill pathogens). The supportive settings were tough on me sometimes because of electrical sensitivity, but as with anything, it was easier to handle when my overall condition was better. There's a setting specifically for herxing, which helps people a lot, but it works by speeding the herx along, not relieving its symptoms; to me, speeding up a herx is only good if the herx symptoms are something non-dangerous (like intensifying joint pain is fine with me, but intensifying atrial fibrillation is not!). But that's not a complaint about the AmpCoil - any good detox remedy speeds up herxing. And most people say that the AmpCoil herxes only last a day or two for them.

Hansa - Thanks for the links to threads about this. I spent a very long time bopping around the internet learning about hansa yesterday. Can anyone tell me more about the at-home protocol? Is this something only for folks who have been to Hansa, or (since the products can be purchased online easily) is there a protocol for folks who can't go to the center?

Teeth - I have felt for a long time that dentistry is basically in the dark ages. And that's especially disappointing to me as someone with flawless dental habits but terrible dental outcomes! I just can't afford the holistic dentist in my area - $900 just for the initial consultation! My conventional dentist is very frank about dentistry's limitations and knows a lot about the toxicity of the materials she uses, but her conclusion usually is that there are issues with every approach and that teeth basically are a pain in the ass. Not exactly reassuring, but somewhat refreshing....

Viruses - The virus I had in October remains a mystery - mainly outrageous throat pain for ten days, no fever, a few swollen glands, normal energy, sniffles at the end. It was after those symptoms passed that the muscle and nerve issues began. My IGG for EBV has been very high since Lyme took over three years ago, and remains high. (I was sick with Lyme many years ago undiagnosed and untreated, but it was wonderfully dormant for many years until I contracted EBV in January 2016.) I'm sure that's part of the puzzle. I am on olive leaf extract right now and have taken other antiviral herbs in the past (antiviral pharmaceuticals make me vomit and give me liver pain). I take immune boosters like echinacea and elderberry, and immune modulators like vitamins C and D and ashwagandha. (I know immune boosters are controversial for Lyme folks because they can encourage autoimmune issues...? Anyone have thoughts on this?)

Has anyone herxed from treating a virus? What are viral herxes like? I had one provider tell me that people don't herx from killing viruses and feel only better with successful antiviral treatment, but that sounded too good to be true. Too easy. ;)

I also was all over the Paradigm Change website yesterday. That's all so overwhelming. I guess the easiest thing to do is vacate for a couple of weeks and see what changes.

Deciding what the best next step is can be tough, and I appreciate the help brainstorming!
Posted 2/23/2019 3:22 PM (GMT 0)
The CFS community might be able to help you, I've learned a lot from them.
Posted 2/23/2019 6:07 PM (GMT 0)
Drat, I didn't know there was controversy about immune boosters. I just bought two more bottles of elderberry powder 15 minutes ago. (It's on sale.)

I wish you were here in the D.C. area. One of the LLMDs here is a brilliant diagnostician.
Posted 2/23/2019 7:44 PM (GMT 0)
Ur root canal could be a major cause. I would use a biological dds and have them check to see if its healing 4-6 months later. You may also find it interesting to see if there is a connection to your symptoms by googling the dental meridian chart. Often that can be amazing
Posted 2/23/2019 10:14 PM (GMT 0)
It would be great if pulling root canal tooth makes you feel better! I sure hope so. Please let us know as I’ll be thinking about you!

Do you have just the one root canal?
Posted 2/23/2019 11:24 PM (GMT 0)

saraeli said...

Teeth - I have felt for a long time that dentistry is basically in the dark ages. And that's especially disappointing to me as someone with flawless dental habits but terrible dental outcomes! I just can't afford the holistic dentist in my area - $900 just for the initial consultation! My conventional dentist is very frank about dentistry's limitations and knows a lot about the toxicity of the materials she uses, but her conclusion usually is that there are issues with every approach and that teeth basically are a pain in the ass. Not exactly reassuring, but somewhat refreshing....

Sara,

I looked at the IAOMT site and see there are 17 dentists listed in Massachusetts and more than one in Boston. Maybe there’s another dentist close enough to you that is not so expensive.

You said something revealing here, I thought - flawless dental habits but terrible dental outcomes. There’s something to this, I believe. It could be related to tick borne diseases like Lyme or bartonella or to unidentified genetic issues or impaired detox organs. I know there are a couple of members here who had unusual dental issues with teeth rotting from the inside out. If I remember correctly, they connected it with bartonella or Morgellons.

IAOMT - choose “find a dentist”
http://www.iaomt.com

Not sure how far you can travel, but my dentist is in SC but also sees patients at a NY office. He was much cheaper than that, but not sure what his NY prices are. Let me know if you’re interested.

You did mention bio resonance among the things you tried. Did that reveal anything about the root cause of your sensitivity issues?

I feel like I’m headed in your direction if I can’t get to the root of the matter. My chemical sensitivities have gotten worse instead of better over the past 2.5 years. That is not a comforting thought for me.

I herx on everything for weeks on end until I wear out and stop what I’m doing. Then, after I feel better, I try to restart and herx even worse on way lower doses than what I already did for weeks. I don’t even understand that.

I have major gut issues with constipation and have debilitating mold and chemical sensitivities. I feel like they are connected but still don’t know the exact cause or what to do about it. I have had bio resonance in the back of my mind for a while, thinking it may be my next move. I’m leary of spending more money on yet another doctor or practitioner though. In some ways they’re all alike. They all want you to do their protocol and buy their recommended supplements ($$$), and then I can’t tolerate most of it or don’t want to take it for various legitimate reasons. It’s so exhausting. I just want someone to decode me and tell me what to do and why and have it actually work and be the right thing, but alas, it seems to be all guessing games with the docs I’ve seen. They haven’t done much testing.

Sorry. Didn’t mean to ramble on about my issues.
✚ New Topic ✚ Reply