My apologies, and I need help

july morning - I'm glad you came here to share....Sorry for what you've been going through lately...


Besides Kudzu and Avena Sativa (and Cannabis oil) - are you taking anything else? ie anything to treat the infections?
If not...have you thought about adding in herbals - at low dose to treat?

Have you been evaluated for CIRS? Have you ever been exposed to mold? If I were you, I would have someone well versed in Shoemaker's CIRS work evaluate me for that before assuming Lyme/co and treating infections.

Girlie said...
july morning - I'm glad you came here to share....Sorry for what you've been going through lately...


Besides Kudzu and Avena Sativa (and Cannabis oil) - are you taking anything else? ie anything to treat the infections?
If not...have you thought about adding in herbals - at low dose to treat?

The Japenese Knotweed tincture, sorry I forgot to add that. I'd had so much success with knotweed swishes near the bone loss abcesses where teeth had been pulled or fell out form jaws dissolving that I ran out and it took a while to re-order. So I started dosing with that again too. I've been able to go back in on everything at full recommended dose once a day, no more than that. That's why I had the thought actually getting it into my digestive tract, etc., by have triggered this. I don't swallow the mouth swishes.

I didn't take any JK today however, just the Avena Sativa to instill the calmness. I forgot about the kudzu, I think.

My brain has gotten so bad that I made myself a cardboard clock to keep track of when I take a pain pill. I guess I need a few more to keep track of everything!

WalkingbyFaith said...
Have you been evaluated for CIRS? Have you ever been exposed to mold? If I were you, I would have someone well versed in Shoemaker's CIRS work evaluate me for that before assuming Lyme/co and treating infections.

No and yes, in that order.

I need to give a little history, if it's not in my signature.

In 1984, totally unaware of something called Lyme disease, I was attacked repeatedly by nymph (hatchling) ticks while attempting to mow the yard between where I lived with my baby girl and my Mom on her 40 acres in the midst of a forest. After a year of every quackery a country dr. could drum up, things it is a wonder I survived, I got the diagnosis of Fibromyalgia at the Columbia University Hospital in Mo.

In 1992 while putting up fence in a different wooded area where I lived I started running high fevers for weeks on end, some high enough I got delirious and my daughter not quite a teenager by then running for help from a neighbor. I finally got back to that country Doc I'd been seeing, because I had read an article in the local paper of a woman who had contracted a disease called Lyme there.

My Dr. admitted he couldn't read the results and he gave it to me to take to a Dr. at that University Hospital I spoke of. He told me that the 3 positives on it had to be false positives, that one of them could also indicate syphilis. I was livid with indignation, as I'd been celibate for years since my divorce.
I didn't know what to think so I could only go back to the doubtful Fibro thing.

I had a relapse after should surgery in 2014, and after getting a referral from my surgeon for an Internist, I presented my symptoms and asked for a Lyme test. I had been running fevers again, which he had been making a joke of, saying I had FUO-fevers unknown origin. I have a feeling behind my back the initials were FUC, as "cause" has the same meaning as origin, but I imagine not nearly has funny for him to say.
Anyway, it came back positive for RMSF, to which the health dept. asked me to retest within 2 weeks and it too came back pos. for it.

Anyway, Eventually I found this group and read everything and looked up everything. My eyes continue to open up even currently, like it was just this month I realized that the ONLY test that was run on me in '92 was the Lyme Test. I was never tested for anything else, including Rocky Mountain Spotted Fever, in '92.

Yes I have had contact with mold, but I think whatever issues I have had from it are secondary to the Lyme infection or whatever other infections I've gotten. I've got most of the symptoms of many listed in our files here.

I'm lucky that I had some good years in remission and did some amazing amounts of work. I'm 67 now, and not bouncing back anymore.

As for seeking out knowledgeable people, I live in a very remote rural area and can no longer get to the cities where the kind of specialists this involves, practice, if they even would take a Medicaid card holder.

Healing98 said...
JulyMorning, first of all, there is no need to apologize. Lyme can kick our butts like nothing else can. It is greatly appreciated that you help out as much as you can. What really counts is the help that we give each other. That is what makes this forum so special to each of us.

That being said, There are a few things that I would like for you to consider. If your brain symptoms are caused by Lyme, I have found Ceftin and Minocycline to be very effective for dealing with my brain symptoms. I have tried so many different abx and these two seem to be the most effective at stopping or minimizing the symptoms.

One other thing that I would like you to consider is Candida. Many of the symptoms that you mentioned can be caused by Candida. One of the things that stand out is the feeling that you could no breathe and chest pain.

You see, I have had symptoms similar to what you experienced. For me, the Candida irritates my esophagus and what I think is an ulcer on the left side of my stomach. When this happens, I feel like I can't breathe. The irritation hurts my chest where it hurts to breathe because as the lungs expand, it somehow puts pressure on the esophagus (or its nerves) and it hurts.

When this happens, the nerve pain triggers an anxiety attack in me, raising my blood pressure and pulse. Last weekend I had such an episode, raising my blood pressure to 175/95 and pulse at 110. My normal BP averages 125/78/78.

Many of the type (neck, back, pressure, electrical, shock) of headaches that I get seem to be nerve related due to inflammation. I can tell because massage, heat or putting pressure on them can make them stop right away.

As for "this is it for me". Trust me, I have been there. It has been so bad for me that one day I put all of my stuff at work in a box and put my wife's phone number and our address on it so they could ship them to her. I was so sick that I was sure that I only had a few days left on earth.

Do you know how sad and depressing it is to create a folder with your insurance paperwork, passwords, and Will in it so that your wife has everything for when you don't wake up the next day? This was me 6 years ago and look at me, here I am still. I am at 70-80% normal and able to function OK most days.

Please don't give up. As ill as you feel, the body is stronger than we think and very resilient. It just needs a little bit (well, maybe a lot) of help and it will pull through.

I think I got lost trying to research Ceftin and Minocycline when I was active here. Not sure where or how to get it and what it might not work with that I have to take for other issues. It's hard to sort this stuff and keep it sorted long enough to do something. I think you feel my pain.

And this isn't the first time it had the "this is it thing". The 3 months I was on Doxy I managed somehow to get to a title company to have my daughter added as owner of my home/property on my demise, as well as the Court House to pay their fee for the transfer. I started a journal of all my necessary affairs of taking care of all bills, animals everthing I do on a month to month basis, for my daughter's use whenever. See, I wasn't fully informed about probiotics, and since I took high doses for 90 days, not much worth while was left of me, lol.

COPD is a different game. When I had the shoulder surgery the nerve block given me shouldn't have been.

I was told I had breathing issues coming out of surgery, and the anesthesiologist ripped the lidocaine nerve block from my neck when I went back to the hospital unable to breath. He admitted I wouldn't have lasted the night, it was paralyzing my diaphragm!

What I have learned on my own since is that it damaged my phrenic nerve, so still affects my ability to breathe, thus I was put on night oxygen almost immediately and then after a year, 24/7. I am a co2 retainer because of the faulty nerve and diaphragm.

It's between these two issues, and that I can't get 30 feet away from my oxygen without having problems, coupled with this brain thing going on that scares me. And I am 67 so.....

I have had acid reflux all of my life. I used to vomit at being startled during school age. After complaining about an ulcer I got started on prescription strength zantac for it for at least a year now, twice a day. It does the job. Would this only bother me for a minute at a time? I dunno.

The surgery was Spring 2014. The breathing problems as I said, came immediately, but the realization that I was getting sick again somewhere the following Winter, but knowledge of Lyme and everything else ticks can do, didn't really come until joining this group 3 years ago this past July.

julymorning said...
Thanks walking, I am absorbing all of this, but sadly there is nothing that I know of that I can do beyond what I have already done.

It's good to have someone recognize things we might have in common, what are you or did you do to affect some kind of healing from mold exposure?

After being diagnosed with CIRS, I was told to do an ERMI mold test on my home and workplace. They confirmed I was being exposed to mold.

I left both places and moved in with a relative. An ERMI test confirmed the relative's house to be a cleaner environment but still not clean enough to help me heal.

I could not tolerate cholestyramine, which is the most effective binder for mold toxins. I use modified citrus pectin and activated charcoal instead. I also bought an air purifier.

My mother and I are looking for a new home with a clean enough indoor environment. We haven't found one yet.

Treatment for mold in a nutshell is:

1) Remove yourself from mold exposure. (This includes exposure to possesions that have been in a contaminated environment.)

2) Remove the mold toxins from your body.
- binders (Cholestyramine, modified citrus pectin, activated charcoal, bentonite clay, chlorella, etc)
- far infrared sauna
- sweating
- glutathione supplementation

3) Reset the immune response if necessary.
- final step in Shoemaker's protocol is VIP spray, which potentially can reset the dysfunctional immune response

These are the main 3. There are about 12 steps total, depending on how many abnormal labs the patient has.

Okay, I've read your post. I can't do most of it, and don't need the test unless it can pinpoint that I have a problem with the mold. From what I remember not everyone does.

I can't move, I have no family other than a daughter that is borderline on the street as it is. I live on SSI, and own this place and it is not worth enough to sell for a better home. Shoot, I couldn't physically conduct a move under any circumstances.

What I can do is try any and all the internal removal methods from my body, save for air purifiers. I wasted money for a couple of years buying used ones that all had some function messed up or part missing. I could not afford the new ones I looked at. But I'll try.
I sweated all summer long, I can not afford to use the room a/c my friend bought me. I sweat pretty well too, haha.

Thank you so much!

Thank you everyone! I've not showed outward symptoms of Candida, or thrush so it's not something I've felt I needed to address. I didn't think it important to mention that l've had some mini trokes/tia's-this was prior to my co use by some months. This was an observed diagnosis, I sure didn't know what was going on. I no longer push myself while having to be temporarily off the oxygen, and I try to avoid being stressed. But you never know what's going on inside for sure, so I'll put d-limonene on my shopping list for next week.

Meantime I'm back to having to work out my schedule for taking everything. I've decided to take the co before bed, and I have other meds I am supposed to take before bed so I can't take the charcoal then, nor in the morning, but maybe I can throw back some ACV with the Mother at that time. I was doing foot soaks all Summer as a way to cool off, now it's about time to doing them with warm water.
I'll have to take any chartabs mid-day.

I've not had an incident at all today, and only a very short partial yesterday early. I haven't really tested my memory, but as for it's functioning level today so far has been good. I think. Haha. I feel like a blank slate though. Nothing whatsoever is crowding my mind, which is likely a good thing.

My friend told me I really looked out of it at the Dr's. Thursday. He said my eyes were barely open. I had no recall of anything unusual other than the zone out attack at the elevator and the crying/laughing jag with the Dr. But he always makes me cry, he kinda bullies me. Not this time though, maybe I was scaring him.