I've had a very bad 1.5 weeks, and I have now been awake since 1 am. I cannot sleep. I don't know why I go through this. I just cannot sleep and the past several days have been SO bad.
I am in so much pain, and I don't think my doc is on the right track, because every time I do antiparasiticals I quickly get worse. I know something more is going on. Why can't we find the right treatment?
ALL I WANT TO DO IS BE ABLE TO SLEEP, EAT, GO TO WORK LIKE A HEALTHY PERSON, AND RAISE MY FAMILY. THAT'S ALL!!!! I HAVE NO LOFTY AMBITIONS. I JUST WANT TO LIVE A NORMAL LIFE, WORK, PROVIDE FOR MY FAMILY.
I am so sick of this! Why can't I get my breakthrough? Some things help, but I continue to worsen. I wish I had never been diagnosed! Nothing but misery for the past 5 years!
Posted by momindeep (Member # 7618) on :
How very frustrating for you...I can't imagine how robbed you feel of life's basics.
I can offer genuine sympathy tho...I watched my daughter suffer for years on end.
What I observed and learned: You have to listen to your body..if a treatment has been given a fair shot, you aren't responding, time to change it up...even if it is the 20th time. Secondly, it can take a long while to get better...and you need a doctor that can trouble shoot and think outside the box...I don't know your doc, but THAT was of utmost importance in my daughter's experience.
So sorry TNT...I know you are a thinker and a problem solver...don't give up...my daughter had that terrible insomnia and it made things worse for her too...as if you need any more struggles.
Don't loose hope...well, maybe for a day or two...but please...not forever.
Posted by lpkayak (Member # 5230) on :
Ditto all mom said
Tx IS impt but so is living
Meds and supps i take for sleep, pain, digestion etc are also really impt
I had to do the listening to my body a lot...
Visataril is what i found gives me really good sleep but not drousy during day. Sleep is so important...you cant think without it
I hope you figure it out...sorry you are struggling
Posted by Lymetoo (Member # 743) on :
Perhaps a change is in order? How about trying the natural route?
Our bodies CAN HEAL if we get out of the way.
Posted by TNT (Member # 42349) on :
Thank you, momindeep & kayak,
I do appreciate your kind words and suggestions.
Lymetoo,
I have done much natural treatment. Cowden does nothing for me. Byron White helps some. I use a rife machine. The machine helps some; have done hyperbarics, sauna...
I find your suggestion a little strange. Our bodies will heal, I agree, but not until the infection load is at least brought down. And certain drugs have helped more than any natural treatment to date. But I really wonder how it would have gone had I done natural treatment from the beginning. Nobody told me the pros and cons then. I've had to learn them myself.
The insomnia is a killer. And whatever infection is causing it is taking the life right out of me, and by more than a lack of sleep. My body is decimated.
Posted by Lymetoo (Member # 743) on :
Did I understand you correctly that you've been treating for 5 years? I would think that the infection is gone by now and you are dealing with what Lyme has done to your body.
Find a good functional medicine doctor or health coach and see what they can do for you. Do juicing, get rid of candida, whatever you can to address getting your body back into a good place.
Just an idea .. you don't have to buy it.
I have found great help just by balancing my minerals. Taking ReMag and ReLyte has helped a lot.
I do have sleep issues myself, but as long as I have Ambien I'm OK.
Hope you find SOMETHING that will help. Keep your mind open.
Posted by Catgirl (Member # 31149) on :
Insomnia is a symptom of proto (fry bug). It is a beast to live with, and IMO much worse than lyme. Proto protects all co infections so it needs to go down. I am finally sleeping soundly again (got bit again last year).
I believe getting rid of heavy metals is very important for sleep too. Every time you kill parasites they release heavy metals back into your body though. They hold onto them just like we do and more. For this reason, you need binders when you work on bugs.
Then there is the adrenals. Supplements help, but I'm sure your doc is on top of this. Surprisingly what has helped me the most is therapy. We hold onto stuff we don't even remember much less know we are even doing it. It is there under the surface where we cannot see it. It's part of the puzzle--I strongly recommend it.
Just a thought, if you are getting worse after parasite meds, you could either be herxing or you might not be able to detox very well. Coffee enemas work for this.
Hang in there!
Posted by happytoday (Member # 45075) on :
It's the Lyme! This is what I say for the problems with lyme, it makes people crazy! TNT, I don't know what all you've done, but I am about to treat myself for lyme with herbs that we used at the lyme clinic I worked at about 8 years ago.
I have thought all this time i should treat myself but never did, then have had pain for years and checked for MS - so I am now thinking it has been lyme all along…
Before ordering the herbs I did consult with my former physician who is treating me for adrenal fatigue - I was treated about 4 years ago and didn't continue since we moved - my saliva test for cortisol was sky high all samples, and that does not allow for sleep.
I had major stress from adopting my older child from Ukraine and it caused major stress to my body. I am taking supplements for adrenals and very strict diet right now - so a good time to start lyme protocol!!!
Have you checked your cortisol levels? Glenn Beck on tv/radio recently revealed how ill he was and didn't know what was wrong, been to every doc and was headed for being debilitated and death…then found out he had adrenal burnout and is on road to recovery - this is how bad adrenal problems are these days….
I am sure life is hard, I get so emotional and upset/depressed wishing I didn't have pain at night, if I could just sleep without pain medication I can handle day time pain! Sorry for your situation!
--
**edited for easier reading... please put space between paragraphs**
[ 12-16-2014, 08:34 PM: Message edited by: Lymetoo ]
Posted by TNT (Member # 42349) on :
Lymetoo, I AM addressing mineral deficiencies. And functional docs have not been very functional.
Catgirl, I tested negative for PR by protozoa multiplex ,thank goodness; but earlier was led to believe that I had it. Metals could be a possible player, but my urine test results were not terribly high...nothing like the examples Dr. H talks about in his book.
happytoday, I am starting to believe it is the lyme itself, too. It is definitely infection (with definitive labwork) with a possible complication of poor detox. For sure it is Bart & protozoa, but likely fungus and brucella, too.
I am nearly too discouraged to keep at it. It seems the docs either just want your money, or they don't know which way to turn. Show me a truly compassionate doc that has no alterior motives involved other than doing what I ONLY want to do... and that is (to be well enough) to provide an honest living, work hard, raise my family, and make a good contribution to society.
Posted by Lymetoo (Member # 743) on :
Fungus is a monster.
Posted by MannaMe (Member # 33330) on :
TNT, have you done any MTHFR testing? My husband has discovered he has trouble detoxing due to the mutations.
Working on detoxing has been very helpful for him. It had gotten so bad he was just going downhill with treatment.
Now we are trying to find the right balance of treating without overwhelming his detox system.
Posted by TNT (Member # 42349) on :
MannaMe,
What genes does your husband have? Is he homozygous for any? What kind of supplements and forms of detox have been helpful in addressing the roadblocks? (ie methylfolate, methylcobaloman, sauna, etc) What kind of antimicrobial treatment is he doing? (ABX, natural, etc)
I have been tested for the detox and methylation snsps and have been addressing them the best the docs know how. Who really has a good grasp of this issue? Seems they just guess at dosages.
My understanding is that MTHFR is not really that big of a deal unless one is homozygous for one or both the 1298 and 677.
I'm curious if you have narrowed it down to certain specific snsps that are causing him the trouble.
What balance do you find helps?
Posted by MannaMe (Member # 33330) on :
We're still figuring things out.... The C677T is Heterozygous for my husband. He also did the test through 23andme and had more snps showed up.
Fortunately our ND had taken a great interest in this and has formulated supplements for the people with MTHFR. We have basically gone along with the supplements he has suggested.
He's planning to run my husband's 23andme report through his system again since there have been updates since he last ran the report.
He is using a sauna and doing ionic foot detoxes. Also added in a binder at bedtime. He's trying to figure out how to get more in without pulling out the good stuff.
My husband had been using herbals to treat but has stopped them because he was feeling too toxic again. It seems he kills off the bugs faster than he can eliminate the toxins.
Posted by TNT (Member # 42349) on :
That is definitely a balancing act, to try to detox a lot without pulling minerals/nutrients. But remineralizing and detoxing alone doesn't even begin to get me anywhere. Done that, tried that.
What are his toxic symptoms that signal you are killing more than he can get rid of? Does he get chemical-sensitive?
I definitely have more trouble with this when killing parasites or protozoa. I get very toxic if I go too fast. I honestly think it is releasing other pathogens into the system somehow.
Posted by Catgirl (Member # 31149) on :
quote:Originally posted by TNT: I tested negative for PR by protozoa multiplex ,thank goodness; but earlier was led to believe that I had it.
So did I (negative), but I still have it. Hopefully you don't but just know the test isn't accurate, as most tests are not.
Also, there is a thing called non secretors. These are people who can't secret metals well, so the test will show very low metals. This is actually real, and so a low test of metals requires further testing to rule it out.
Posted by TNT (Member # 42349) on :
A dietary detox that I have found helpful is eating yucca. It soaks up the ammonia created by the lyme and other pathogens in our bodies. And if one has a less than perfect CBS gene, you need extra support. I do notice a difference with this.
Posted by MannaMe (Member # 33330) on :
I asked him to describe how he feels when he's too toxic..... He said you feel like a big pile of cr**!
His head hurts, his stomach is unhappy, he just feels yucky all over. He will be hungry but doesn't know what he wants to eat, and the food doesn't want to go down. His blood pressure will go up when he's toxic.
He hasn't noticed any chemical sensitivity.
When he rifes for parasites he will feel toxic. I wonder if they are releasing heavy metals or something.... He can rife for babesia everyday without feeling bad.
What are your symptoms of toxicity?
Posted by TNT (Member # 42349) on :
quote:Originally posted by Catgirl:
quote:Originally posted by TNT: I tested negative for PR by protozoa multiplex ,thank goodness; but earlier was led to believe that I had it.
So did I (negative), but I still have it. Hopefully you don't but just know the test isn't accurate, as most tests are not.
Also, there is a thing called non secretors. These are people who can't secret metals well, so the test will show very low metals. This is actually real, and so a low test of metals requires further testing to rule it out.
Pray tell, how can one know anything then!!! I thought Dr. F's protozoa multiplex test was based on quantitative DNA testing. Isn't that the gold standard? If you tested negative for it by that, how did you know you had it? Without DNA testing, they can't know what they are looking at under the microscope.
I follow you about the non-excreters, but I would think a DMSA challenge urine test would be pretty accurate. It seems to me that the DMSA would pick up and carry out the metals regardless of one's ability to excrete the metals by themselves. What else is there to do?
Hair analysis is not that accurate for that reason, but I would think between the two types of tests, you can get a pretty good idea of what your load really is.
Posted by TNT (Member # 42349) on :
quote:Originally posted by MannaMe: I asked him to describe how he feels when he's too toxic..... He said you feel like a big pile of cr**!
His head hurts, his stomach is unhappy, he just feels yucky all over. He will be hungry but doesn't know what he wants to eat, and the food doesn't want to go down. His blood pressure will go up when he's toxic.
That would be a herx for me... also, feeling like I was just getting over the flu (such as achy and weak).
But when I get toxic, I feel sick (almost nauseous) when I breathe in any chemical scent, exhaust, perfume. It even makes my head hurt. I have a hard time describing it. When I'm not feeling toxic, I don't mind the smell of gasoline, exhaust, perfume, etc.
And I get toxic when I take antiparasiticals. Even my poop smells like chemicals, and gets mushy. I, too, wonder what the parasites are releasing into the bowels.
But, for certain it is not just a release of toxic material, because the wasting accelerates, and the symptoms just get worse, and doesn't subside. Binders DO NOT help! Can't sleep, can't eat, and otherwise have major bart symptoms. An increase of other infections would create more toxins, and this is what makes sense.
Posted by Catgirl (Member # 31149) on :
How do you know you have lyme, bart, babs? Clinical diagnosis--symptoms rule. The same with proto. It's better to get out of the mindset that blood tests rule everything out. They don't. They only confirm something if it makes it in the vile, dna or not.
Nope, I vaguely remember that for non excreters, DMSA alone won't work well, even when you test for metals. I believe there is hair analysis and something else, or certain order (sorry, can't remember). I read about this in a book but can't remember which one right now (read a lot of books). If I can find it, I will come back and post.
Posted by S13 (Member # 42830) on :
Tnt, what kind of parasite/protozoa meds are you taking? Know that everything that targets babesia can make bartonella become very virulent (if you have bart ofcourse), especially if it has become chronic over a long period of time.
A longstanding bart infection is almost impossible to kill with abx alone. Very high dose rifampin can be helpful, but often not enough to get rid of it. What have you done in terms of bart treatment?
Perhaps you need to look at the extensive buhner bart protocol in his latest book?
Posted by TNT (Member # 42349) on :
S13, I believe I have had bart or BLO for a very long time; it is definitely chronic and very well entrenched. I have been taking minute doses of ivermectin along with my ABX. With minute doses I am fine, but with an increase, it seemed to set things off again.
There is definitely something complex going on. Rifampin and Doxy have been VERY helpful to me, but I have not been able to get to high doses so far.
I have the Healing Lyme book, but I have not looked at Buhner's latest info. I bulk at extensive protocols because they get very expensive and are even harder to manage. The Synergy Protocol looks like it has the potential to help people, too.
Posted by S13 (Member # 42830) on :
My advise would be to focus more on bart then. Anything you will do now to treat babs will make your bart symptoms more pronounced and will also make it bart harder to treat in the future. Even burrascano says to treat bart before babs.
Try to build up rifampin and perhaps pair it with biaxin if your llmd would allow it? Biaxin increases rifampin levels by inhibiting cyp3a4 enzymes, so it will be even more effective. What dose rifampin were you on before? 1200mg/day often seems necessary, and some need to go up to 1800/day.
But like i said before, abx might not seem to be enough for some. Problem is that it only supresses growth. The bartonella book from buhner might give you some clues as to what you can do to actually lower bart numbers (like suppressing nf-kb to restore apoptosis of infected cells).
Perhaps the synergy protocol can be of benefit as well. I have no experience with it however.
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Breaking up a paragraph for easier reading for many here -
[ 01-14-2015, 05:09 AM: Message edited by: Robin123 ]
Posted by mlg (Member # 35383) on :
I agree with Catgirl. Please read up on Fry bug. There are different ways to attack it. Ivermectin, Mepron+zithromax, other rotating anti-worming agents. Herbs artemisinin, crypto, mimosa puddica, etc.
Posted by S13 (Member # 42830) on :
Catgirl and mlg, why do you assume he has protomyxzoa? He tested negative for it, so based on what symptoms do you think he has it?
Posted by TNT (Member # 42349) on :
I am curious too, as to what may cause you to feel I have the PR even though I tested neg for it?
Does it cause scleroderma? Do you lose your appetite with it? If you have some recent info on it, I would definitely be interested. I did read up on it earlier, since I was led to believe I had it.
Are there gentle ways of dealing with it? When I try dealing with those type of creatures, I get massively worse (and it's not just herxes).
Posted by TNT (Member # 42349) on :
mlg & Catgirl, I appreciate your input. Even though I may see things from a different angle does not mean I don't welcome diverse opinions.
There are blind spots with treating these diseases. With that being said, each one of us knows our own body, and how we respond to treatment better than anyone else.
I definitely feel most of my symptoms are lyme and bart related, with an element of protozoa and fungus to contend with, too.
I am starting to pull out of the hole now, and it has been two weeks since I increased the ivermectin.
I ran out of my doxy over the past weekend, and began to slide. As soon as I got the refill and reinstated it, I had definite improvement again. This, too, would lend itself to the idea of bart or lyme.
Since I have a couple parasite warriors' attention, I have a question. Before I increased the ivermectin, I had the normal random twitching (ones only I can notice). But as soon as I increased, I have had a very noticeable twitching in my one finger that continues on and off all day, but has not subsided to the present.
Do persons treating PR get things like this that don't resolve? I guess this makes me lean towards bart or lyme being released. Especially since I couldn't sleep, had very little appetite, and messed up bowels. I feel very strongly that if you lower the load of a pathogen, you will get less symptomatic from it.
Unfortunately, the PR bug is very speculative. Especially since Dr. F has run to the shadows with info about it.
Posted by beaches (Member # 38251) on :
I wish you would change the title of your thread. When I see statements like this I want to say "with an attitude like that you'll never get well" I know that isn't what you mean, but when it's out there in caps no less, that's how it cones across.
Posted by Catgirl (Member # 31149) on :
quote:Originally posted by TNT: I've had a very bad 1.5 weeks, and I have now been awake since 1 am. I cannot sleep. I don't know why I go through this. I just cannot sleep and the past several days have been SO bad.
I am in so much pain, and I don't think my doc is on the right track, because every time I do antiparasiticals I quickly get worse. I know something more is going on. Why can't we find the right treatment?
No worries TNT, just trying to help you find whatever is holding you back.
These are symptoms of proto. It doesn't mean you have it but what you posted sent up a flag. Attacking it is no fun. People feel much worse attacking it before they feel better (perhaps this is you). This bug protects all the other co infections with biofilm. I wouldn't rely on the test as it's not an absolute negative.
Check out Dr. C's symptom list (2012 IlADS conference). If you don't have the symptoms, you're probably in the clear. If you do have them, at least then you'll know what you're up against and know how to proceed.
P.S. I've had the finger twitching too while treating proto/parasites. For me it's a mineral/amino acid issue.
Best wishes!
Posted by S13 (Member # 42830) on :
Problem with protomyxzoa symptoms is that they are all too non specific, and can be caused by other co-infections as well. There are no specific symptoms or set of symptoms that seem to point in the direction of protomyxzoa.
Like bartonella has rash, pain in soles, severe anxiety, mood swings / rage, etc. Babesia has night sweats, SOB, jaundice, etc. Borrelia symptoms migrate and tend to flare every 4 weeks.
So what defines protomyxzoa? What can be used to distinguish it from the other co-infections?
Catgirl, you seem to be sure you have it, yet you tested negative. So what makes you convinced you have it?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by TNT:
But when I get toxic, I feel sick (almost nauseous) when I breathe in any chemical scent, exhaust, perfume. It even makes my head hurt. I have a hard time describing it. When I'm not feeling toxic, I don't mind the smell of gasoline, exhaust, perfume, etc.
- This is definitely related to gut health, whether it be candida, parasites, or whatever else .. it is related to the health of your gut.
Posted by TNT (Member # 42349) on :
I agree Lymetoo, that is a huge part of it. Thankfully, ABX have been helping.
Posted by Lymetoo (Member # 743) on :
That's surprising.
Posted by RC1 (Member # 31923) on :
It sounds like MCS to me. Multiple chemical sensitivity. That is very common when a person is living in mold.
I had it a bit myself when my house had mold in it. My two cents.
Posted by lpkayak (Member # 5230) on :
A lot of good ideas but i would be very careful with ibuprofen and tylanol...especially together
I cant walk without regular ibu but was told always have it with food and never close to tylanol
Posted by lymewreck36 (Member # 4395) on :
So many good responses. What can I add but my sympathy and perhaps a bit more. Been treating for 12 years now. Never got better, but then my body got sensitive to the medications and I had to stop taking the most effective ones like zith and omnicef, and I went downhill to bedridden really fast.
Still test positive for the infections and have direct cause effect in taking them with some improvement after a herx, and stopping them and completely falling apart.
What I have learned is that a body becomes so hugely toxic to itself after all this treatment that it's hard to tell if the disease or the treatment is causing the problem. I would say it's a combination.
I just glanced over most of the responses, but not sure anyone mentioned treating biofilms with your infectious treatments. Biofilms and cysts are a must.
And my family has started with a integrative doc who is lyme literate, and he rotates two weeks on hard hitting prescriptions and herbals, followed by two weeks of intense cleaning out of your entire body system with no prescriptions on board.
This allows the immune system to remember how to work when you are off antibiotics, and allows your body to process out all of the kill-off and medication chemicals.
My kids are trying this now and doing well. I am waiting for gamma globulin to be approved for me since my immune system is failing, in the hopes of being able to drop meds for at least a week at a time and begin the rotation of on meds and off meds.
I used to believe in hitting it hard for as long as it takes. It didn't work.
Biofilms, regular cleansing of your system with Clear Change by Metagenics and an elimination diet to take out inflammatory foods and support detox.
And also binders as often as you can, taken far away from meds and vitamins of course so you don't bind them.
Use Vit. C. and/or Magnesium to help if binders cause constipation.
Hitting hard and long with meds for years on end makes a person just as sick as the diseases we battle.
I hope that helps and best of luck and healing to you.
Mary
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Breaking up a couple paragraphs for easier reading for many here -
[ 01-14-2015, 05:15 AM: Message edited by: Robin123 ]
Posted by Robin123 (Member # 9197) on :
For sleep, are you able to take benadryl ok? I take 25mg at bedtime and 25mg more if I need it. It works to put me to sleep. Without it, I'd be on the Lyme cycle - like way past 24 hours rhythm!
Re MCS, that can indicate liver too. Interesting that you say when you're not toxic, it's ok. At least you have that going for you. I'm 24/7 chem sensitive. To see what's going on with the liver, the detoxigenomic liver test is a good one, so is the 23andme genetic test, interpreted by geneticgenie.
One tool that I use for that is FIR saunaing a couple times a week. I did it initially once a week for 6 months and suddenly I wasn't sensitive to smells like I usually was. My doctor explained that I had detoxed enough to arrive at a threshold of being able to handle incoming chemical processing.