Naturopath and supplementation and an overburdened body.

[Misfit Toy]

@Ema IVIG is off the table. I was too sick on it and honestly, I would rather die of an infection than do it again. You seem to take a lot of stuff that I could never do. Again, I think it really depends on how long you have been ill, etc. I am not strong enough for the IVIG and I felt NO better on it, only sicker. In fact, my nails, ever since having been on it break like no tomorrow. They are so thin now. My system is too sensitive, my liver is not working well enough to handle it and it's way too much for my body to process. The new immunologist who specializes in CVID in Philly is not wanting me on it. He saw my rash and was in awe of it. It covered me from head to toe. That was from the IVIG. Even if I did it SubQ, I have no desire to feel so sick every week. And, I felt NUTS on it. Again, it was the way that I was processing it. My body didn't know how to handle it. I am not even sure if I have CVID. So many can take it with no problems and I am so sick and have CFS. It's a whole different ball of wax.

Back in 2002, I could do a lot of this stuff. I could take hydrocortisone. Not now. I could take a lot of stuff, but the years have passed, I have become older and worse and no one has gotten to the bottom of what the hell is going on with me.

I went to the naturopath because I wanted help with my adrenals and he said that the adrenals are a mess because of a chronic persistent bacteria in the gut which may or may not be true. I think what @GracieJ said is right no. HE is going about this all wrong. He needs to build me up first and then attack....slowly.

I counted that I was on 20 pills a day.

I refuse to get sicker in order to get better. It's one thing to feel more tired, it's another thing to be in more pain, not sleep, itching, crying and feeling like an absolute mess. That's not normal.

I also think or can't stand that all of these doc's want you to buy THEIR supplements. I have closets full of all of this crap. I really don't need to buy theirs when I already have 2 different kinds of milk thistle. They all insist that theirs is best.

So, I see him in 2 weeks and I will give him a reality check on how ill I am. The only thing I know right now, I can handle Chinese herbs easily, I can take Vitamin D, Rhodiola and Omega 3's and ONE drop of milk thistle tincture in Dandelion tea. That's what I can handle. Oh, and Natural Calm in a glass of water. No problem. Chinese herbs I drink and I do really well with them. But, will they get me better? No go so far. They just help with sleep, which is SO essential. And, with keeping me more calm.

 

[Misfit Toy]

"Is this new tack separate with the financial changes and family issues?" Hi, @GracieJ , you asked me that question. I am not sure what you mean. I could afford it because my mom is back in my life, but I am not having to help her as much or actually much at all. We are talking on the phone and just checking in. She is lonely and I saw her today. I actually feel sorry for her because she is so unwell. And, my brother is not in touch which makes me sad. All he cares about is her money. HE asked her last week if he was cut out of the will. ITs just sad. That's all he called about.

My business did well in the month of March, but who knows how this month will go. So far, slow, but not bad. My mom is helping.

Not on IVIG anymore. Not sure if I will do again.

I am lucky in some ways. I am not bed-bound. I can get out almost everyday. However, I am always suffering in some way, whether it's pain, exhaustion or malaise, a migraine, you name it. There is always something going on. I have no energy for anything other than taking care of me or work.

I feel like because I can "function" albeit minimally, I should be able to get better or make some improvement. In 25 years, I have never been housebound. I just feel like I can't rise above the glass ceiling.

Phase ll of my liver stinks. It's horrible. And, supposedly it's genetic and there is no getting around it. One thing that is huge, is my cholesterol is horribly low. So, because of that...I make no hormones. No adrenal hormones, etc. And, they don't know how to correct it.

 

[GracieJ]

@Misfit Toy I am not up on all your posts, wasn't sure if you were trying something new because finances had changed. I cannot keep up with the flood on this site!

Trying not to assume anything.

There are definitely challenges with a high level of functioning. Sometimes I feel like I do not belong posting on this site, as I am working and function pretty well. The rest of the time, it is my lifeline! I can really relate to what you say about getting out and doing a bit, but it is not a normal chain of activity, more hit-and-miss with a lot of miss! It is 7:45 on a Wed night and I am typing this from my bed. I probably will not get back up until about 1 pm tomorrow afternoon. It is definitely a "miss" today for activities.

A story from 22 years ago came back to me today, hope it makes sense.

In 1992, I saw an alternative doctor who could have helped me a lot, but had all his pet remedies. He prescribed 10-15 bottles of this and that and gave instructions to buy other things. I was out of money, and one of those other things I did NOT buy was acidophilus. What did I know? Nothing. I dutifully did his diet, took all the other stuff... and years later with a better knowledge of what it all was, I would have done well buying ONLY the acidophilus at the time. His advice messed up a lot of things, and I will always wonder if just a couple of things to address digestion would have been best for me to start.

 

[Misfit Toy]

Yes, regarding the hit and miss. Two years ago, I had more better days and could really do. Now, it's a lot of miss and missing. I completely relate to that much time in bed and then the next day being much better! So strange, this illness or my adrenals.

Acidophilus. Just took 2! They've never really done much though. But, will give another whirl.

 

[taniaaust1]

I can understand a naturopathic doctor wanting to work on the gut while also working on other things. Thing is only YOU can know how much your body can handle and you need to do things at your own pace and slowly try to build up on whatever you are on. (I'd be very wary of any naturopathic doctor who made me buy "their" own products thou!).

Acidophilus does nothing for me either.

Many ME/CFS specialists do put their patients on Ashwangandha, my CFS specialist does that.. and I think Dr Cheney uses that too with his patients. So far thou the Ashwangandha has done nothing at all for me, I can notice no change in my adrenals (umm maybe my blood tests thou could show something, I havent been retested). I believe my CFS doctor will probably tell me to increase the dose when I get to see him next..

Ive had no luck with Western Herbal Medicine. I got my ME while I was studying at a Naturopath Medicine including western herbal med at a college, doing a gov accrediated course in this field so was surrounded by Naturopathic lecturers when I got sick. I tried everything and had consultations without no luck at all in herbal medicine helping me. I just ended up bedbound by a year later.

best luck.

 

[Misfit Toy]

The biggest thing that is upsetting me right now is that I can't sleep. I slept 3 hours last night and woke up in an insane drenched sweat. I was not like this before the supplements. I was sleeping great. I stopped them on Tuesday and I've gotten worse.

I am scared. I don't know what's happened and now I'm questioning...is it even the supplements. I thought for sure I would sleep last night because I had Chinese herbs, but no go.

Now, I am just super sick, dealing with reflux, physically drained, panicky and not sure of what to do.

Yesterday I took milk thistle. Today I will take nothing.

The naturopath is hell bent on me taking his milk thistle and is really wanting me on glutathione in it, but I can't handle glutathione. It makes me way too sick.

My friend is letting me stay at her house tonight because I feel so scared and drained.

 

[peggy-sue]

I'm really glad to hear you're staying with your friend.

 

[GracieJ]

Acidophilus at the very beginning could possibly change the syndrome's course. 24 years out, it gives me an awful stomache.

Ashwagandha did little for me the first two tries. These days, four capsules of it is like a nice dose of ACE and feels like heaven. If I miss a dose of it, I drag for the day. It is clearly the kingpin in my functional level at this time.

My second most important "supplement," one I would not be without, ironically is caffeine. I recently bought the powder form, a micro scale, and itty bitty measuring spoons to get it exactly right so I can function in the day but still sleep at night.

According to Dr. Myhill, caffeine feeds an enzyme that speeds up ATP production in the cell. Whatever the mechanism, it works for me. My recovery time from exertion is shortened, and I am able to work a few hours each afternoon. I start with 100mg about an hour before work, and if I need to 3 hours later, take another 25-50mg.

 

[GracieJ]

Not sleeping is the worst.

I am experimenting right now with raising my bed and pillows a few degrees to help with breathing, digestion, and GERD issues. It is so upsetting to awaken suddenly with a mouthful of bile taste and gagging to recover. There is enough going on without that happening.

The most important thing to know about herbal medicine is that it works slowly, feeding and rebuilding the body. There are relatively few that you feel the effects within a day or so. It took being on a specific regime in some cases of herb or vitamin or mineral therapy for over two years before I saw results. I just had to trust that the process was happening - and it was.

 

[Misfit Toy]

I love caffeine but cannot sleep on it even if I drink a coke in the early Am. It sucks. I love it. IT helps me so much. I am much more focused. It's the best and worst.

Well, just reading the probiotic and he sold me probiotic with gluten protein in it and I am celiac. I am wondering if that could be one reason I am so sick. I am not sure what gluten protein is but have looked it up and I think it's an issue. How crazy. I have my own good probiotics but he had to have me have his. Not right.

Well all, I wrote him an email telling him this will not work between us. HE is way too aggressive and questions me when I tell him I can't take glutathione or grape seed extract. GSE causes my IC to go bonkers. I need one thing at a time.

 

[Misfit Toy]

I want to raise my mattress but I will need help. IT's so heavy. It's organic wool. What do you put under it? A slope of some sort @GracieJ ? The GERD is an issue.

 

[GracieJ]

Your probiotic came with gluten? What a nasty package.

Just posted recently about raising my bed...

http://forums.phoenixrising.me/index.php?threads/inclined-bed-therapy.29680/#post-453620

 

[peggy-sue]

I can't believe a so called health practitioner gave a coeliac gluten, MT!
He needs sued for that.
I'm a sue... let me at him!

 

[GracieJ]

Oh, doctors just hate me. I ask for package inserts/labels on the spot to discuss ingredients! It just ruins their moment of authoritarian one-up. Whaaaa.

 

[Misfit Toy]

I am similar but missed this. I need to see every ingredient because of my intolerances. He may say if I mention it to him...well, it's gluten protein...but isn't that gluten? I am not sure.

I can't have soy, gluten, wheat, milk, pear, tomato, it's a mess.

 

[2012]

I recently went to a Naturopath for adrenal help. He's skilled in ayurvedic medicine and TCM along with naturopathic. Anyway, he basically feels that the gut should be treated first followed by everything else. The problem is, he put me on a ton of supplements and a lot to kill the gut bacteria and then wanted me on NO carbs.

After about 3 days, I became really sick. I was put on this stuff called NEEM for the gut. It basically gets through the biofilms and kills yeast, parasites, etc. I started to itch really bad on it and had to stop it. But, I was also put on Butterbur and a few other things like Ashwangda.

I find that the more I take, the sicker I get. I can't handle too many supplements or meds. Going off carbs was too much for me and I started to become weak. Really weak. I am allergic to milk and my options for food are limited. Eating nuts, protein and just veggies was making me feel sick and I didn't want to see another nut again. I can't have yogurt due to the milk allergy and goat's milk, I am also allergic to.

I had to call him and tell him, I can't do this. I have to have carbs, I am weak and also that the supplements are just too much.

He feels that because of my liver, I am unable to handle things. So, now he is sending me milk thistle, which I already have, but he wants me on his. This is expensive and I am exhausted and confused.

I am really not sure what to do. I am tired, sleepless, I have horrible allergies, I have lost a ton of weight. I feel awful. The trees are budding and my nose is running like crazy.

I need to tell him, I can only do one thing at a time and really not push it. It's too much on my body.

I feel like no one gets this. You walk out with a gazillion supplements and you become sick. My body is not keen on being pushed. They make it sound so easy. "Treat the gut, the other things will fall into place. Here, here's a ton of supplements....take 10 pills in the AM."

Now, I am so sick.

I can handle TCM really well. Herbs, but that's about it.

For 25 years, I have been on a quest to get better. Not well, but better, but the more I try....and the more time goes on that I have been ill, the more I am unable to tolerate "stuff."

I used to take about 25 vitamins a day. Now, I can't do that. My body has gotten worse over the years.

Does anyone have any advice? I am so frustrated.

I haven't read through the whole thread but your original post sounds very similar to my experience. My doctor prescribed who knows how many supplements and I got very much sicker most likely due to them upsetting my gut more. It took a while for the Dr to realise just how sensitive I was to everything and therefore by the time I actually started listening to my body and not the Doctor, a lot of 'damage' had been done. Digestive health has gone from bad to worse to extreme with food & weight loss critical. Neurological and nervous system has gone absolutely haywire. Overall health is a lot worse - understatement!! Everything I take seems to cause more problems even though test results show critical issues requiring supplementation and treatment. I'm sorry I can't be more helpful but I don't really know any answers to help you apart from obviously listening to your body and make sure your Dr/Naturopath knows just how unable you are to tolerate this sort of protocol.

 

[Misfit Toy]

@2012 I am sorry you got so much sicker. It's really not right. They shouldn't push like that. I fired mine. The other day. I explained that I am sensitive, have been very sick, who conceded to that while I was in there...he told me I couldn't handle a lot and then he goes and pust me on a no carb diet and is trying to kill pathogens, while knowing I am sick, my liver enzymes are high, etc. He never apologized. I just told him, this will not work. Your approach is too aggressive for me, and I am going to need to find someone who moves at a slower pace trying to build up my body, help gently with my liver and best of luck!

His response; I agree and understand. BYE.

What an ass! He had too much of an ego. I found out from someone else that they felt the same way about him. That he talked too much about his accomplishments.

I have decided to do what GracieJ is talking about....treat myself. I really don't need a naturopath right now. I need to heal from all of this "stuff" and take it slowly. Besides, I have everyone here to ask questions of!!

Again, I am sorry you are so ill 2012. I have a lot of the same issues you are describing. My digestion is actually better from cutting out gluten and milk due to celiac, but still have major issues and am always tired. So tired and so much brain fog.

 

[peggy-sue]

I'm mad for you that you had to pay him for making you so much worse, by ignoring how sick you are and ignoring the fact that you are coeliac. He should be compensating you.

You are the best expert in your own illness. You are highly intelligent, you are perfectly capable of treating yourself right now, because you know what you need.

Loads of recovery time and gentle, gentle little steps forward - when you feel up to it.

 

[Misfit Toy]

Ok, but now how to kill dysbiosis? Lots of food yesterday and now I feel like I've been hit by a truck.

 

[brian&ME]

This is what I take and this is off my own back as my doctor isn't the best,all I've done is my best at research
Acidophilus 6 million ed
L-glutamine 20mg ed
Omega 3 (pure epa) 1200mg ed
Garlic odourless 4000mg ed
Vitamin D3 10,000iu ed
Vitamin c 2000mg ed
Echinacea 1000mg ed
Zinc 100mg ed
Glucosamine 2000mg ed