lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
help. Taking relax max, magnesium fish oil haven't slept 5 minutes ondamed soon. help. Starated hormones a short time ago. wasn't stable before them, worse now. menopause time too. losing my mind can't stop shaking. stopping antibiotics low whites per doc. not logical just all wrong.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Oh LIP!
I wish I could help.
I would zoom down there in my transporter and give you a hug and we'd eat chocolate mousse and drink red wine.
How I miss those treats...sigh.
Hang in there. Does deep, regulated breathing help?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
I'm worried about you too LIP.
I wish we could do more for you. I wish we could take away some of your suffering.
I prey your doctors work together better and that they get on the ball.
Here to listen-
Your Lyme Family
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Did you ever get a chance to do the 23&Me test? It will show what your methylation issues are (very important). If you don't know what your own genetic issues are, then you could be aggravating and/or creating your own issues by taking supplements that are actually bad for you.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Please, please find a doctor who can give you the right meds, anti-anxiety meds, etc. This is way too much to endure; it's not safe.
I"m so sorry that you are going through it. Do you have a helpful doctor?
Catgirl has a very good point, too.
But this is beyond the help of supplements alone.
Posts: 3771 | From around | Registered: Mar 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
my mom had undx lyme for the last 10 yrs of her life. one of her worst sx was uncontrollable shaking from anxiety.
the regular docs gave her very large doses of vistaril. it was the only thing that would control it.
i got very mild anxiety that didnt make sense-it often woke me in the early morning and i could feel the bed shaking i was shaking so much
i started taking low dose of the vistaril and my shaking stopped. i began taking it when my shaking was mild and intermittent
i am now up to 25-50 mg a night to help with sleep and since i have taken it for insomnia i have not had the shaking. i also get 6 hrs straight sleep with dreams(rem) and not having to get up to pee.
i think its a really good drug. i am not groggy in the morning. its an old drug so the drug companys dont make money on it and the docs dont push it. but maybe you could ask
im not sure if it will be ok with your other meds
hope you feel better soon
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Have llmd tomorrow. I wasn't great before hormones but worse now. I have to give them a chance. Slept last night, still non reality, my sister swears this is from medication. I'm trying to wean off psych Meds, just keeping klonopin yo get me through. I stopped antibiotics, have to. I did 3 mos bicillin , all just too much for my system with menopause. Im trusting my husbsnd, my llmd said hormones at this time was much, but that might be the problem. I always had bad mind stuff near period. I wanted to be committed yesterday. It's too much work and I can't keep track of all. I get ok for a wile, my salt drops..menopause., Bart was up on the ondamed. I'm useless now mentally. It might have started as Lyme, but it goes beyond that now. Cortisol off charts, hormones below low. I was so strong at one time, taking care of parents, raising a kid when my husband worked double triple shifts, taking care of all, each minute is a chore. I just want some strength, not a pity party, but I've seen me go so far down. Monday pm I snapped back, not for long. Thanks for always being there. We all want a happy ending.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I'm praying double time for you.
I hope your LL has some good options for you.
I have heard that decreasing psych meds too quickly causes anxiety/psych rebound symptoms.
Did you ween off the meds too quickly? That would definitely cause some serious anxiety and brain drain.
I got some new sleeping pills yesterday...and not kidding, the fold out info sheet was as big as a newspaper. I had to spread my arms to unfold it.
The print was so small I could barely read, but it basically said the same thing.
That one could expect rebound insomnia for up to a week when stopping the sleep meds.
What?! So I didn't take one.
I know what you mean about "what came first? The chicken or the egg?".
Are the meds causing the symptoms? Or were the symptoms their first? Kinda thing.
I am trying to reduce my Effexor dose. It messes with blood pressure-which I didn't know. And I am at an atypical high dose, trying to come back down.
My doc said to go real slow. Every 7 days make a tiny doseage adjustment. Wait 7 days at the new doseage and then make another tiny adjustment.
I am thinking of you Putnam, and praying you're OK. You're a strong woman.
Be kind to yourself.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Have you worked on healing a leaky gut? I think that could be contributing to your other issues. When hubby had gastritis early on nothing we did helped until we got his G.I. in better shape.
If you are absorbing too much or too little of meds and supplements it will cause wild swings in blood levels which could be contributing to your symptoms.
Your case demonstrates just how bad all tickborne patients need a dedicated hospital that can treat the many issues ranging from psych to neurotransmitters to adrenal function and more.
Praying for you.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
You sound totally miserable. I hope you can find out what is preventing you from getting better. If you have protomyxzoa, taking magnesium and fish oil will aggravate your symptoms. Look at your IGENEX test to see if bands 23 and 41 were positive.
It seems like what you are taking is not working so you are probably not hitting the right infections. Have you tried an anti parasitic drug, like ivermectin or something to address Bart like bactrim? Both these infections cause terrible anxiety and insomnia. Ivermectin/stromectol will not affect yeast as badly as antibiotics.
When neurological/psychological symptoms outweigh physical symptoms, suspect bartonella. It truly will make you nuts. Are you short tempered with outbursts of rage? Do you feel detached from others, yourself and life in general, like who give a ^%$#*? Do your shins hurt or the soles of your feet in the morning? Do you have pea size brown spots on your skin or loss of pigment, crusty moles, or any other unusual marks?
Some of the more unusual symptoms of protomxzoa are nasal congestion (you think you have a cold or an allergy), horse voice (sound froggy), dry unproductive cough and teeth or jaw pain. You can have stabbing nerve pain. You have cold extremities. You are profoundly tired. With bart you don't feel as tired but both infections give you muscle twitching and insomnia and irritation/anxiety.
Greta is right about the re-bound effect of sleeping pills. They scare me to death. I do have Ambien for traveling and I am so tempted to take it more often because it feels so good to get knocked out.
I made an appointment to see Dr. F in two weeks because my symptoms worsened. The NP gave me Cortisol Manager for sleep and lavender oil. It is extremely helpful. Most night I sleep just fine. You take two of each at night.
I am also getting IV EDTA chelation. My lead levels were three times higher than acceptable and my cadmium was double what the acceptable range is. Getting rid of those metals has helped me too. I haven't had a drug since starting chelation.
You need to examine the whole picture - your whole body. 23&ME is only $99 and you get tons of information including your methyl cycle mutations (download on genetic genie). You can't just shovel in this and that, expecting good results. You need to know what your body is missing and what it has too much of.
You also need to determine what infections you have so you are treating it with the right medication. Bicillin treats Bb and it doesn't sound like your symptoms are borellia. Do you have 28 day flares? The flares are not something you can just not notice. You get much worse.
Think it through and then TELL the doctor what to treat.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I know I have a 23 and 41. Also 2 copies of mthfr. My Lyme was quiet yesterday Bart was active on ondamed. Hormones throwing me or a loop, stop progesterone tonite for a week started estriol Saturday. I'm really drug sensitive. Since hormones I got worse, but I have to try. Everybody inclluding me a my life is a stranger, sick crap. Ondamed tomorrow. It does help, get scanned Monday. If I get through this sane, it's a miracle. Monday night I just snapped back into my life, what the hell makes the change and then back in hell. Thanks, I'm just all wrong.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"I'm trying to wean off psych Meds"
Please do some other mental support like supplements while weening off psych meds. See an ND for other options.
Usually people only discontinue psych meds when they're in a good mental place, and then they do it very slowly.
Your body may be dependent on them, so please just do one at a time and go slowly with just dropping the dosages first.
Also, discuss discontinuing them with your doctor. The psych meds may be helping keep things together.
Posts: 2839 | From California | Registered: Jul 2012
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Thanks all, a God bless.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
I think you need to find a psychiatrist/neurologist Lyme literate. Klonopin and ambien helped me with shaking. Alternating them.
I would treat with anti-malarials, and anti-parasitics. Find an LLMD that treats for that. I think proto.
Biofilm busters, heparin, etc.
Detox, infrared sauna, juicing, pekana detox, PEMF.
Posts: 697 | From CA | Registered: Dec 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
If you can't do the antibiotics, try the antiparastie drugs, like ivermectin. You are in a sink hole and you have to get a grip on this. There is no way going on the low fat whole foods vegan diet could make you feel worse. With 23 and 41 positive, you have PR. Any fat you eat is going to make the biofilm grow 100 times faster.
The diet is critical. If you are not underweight, you could even fast a few days. Then nothing but vegetables - you can make soup. Order a fat binder so you can eliminate all the fat for awhile. Dr F reports when people fast 12 days the biofilm is undetectable, but as soon as they resume a typical American diet, it is back in a matter of days.
Meat has iron which is used to build biofilm so don't eat it. Magnesium also is used to build biofilm. Don't supplement it! I am doing EDTA IV chelation to bind with the iron and magnesium to help break down the biofilm. It really works. But if you can't afford this, you can take oral EDTA and you can make liposomal remedies.
If it is also bart, it sounds like it is enjoying the biofilm protection as well. Do you have outbursts of rage? If not, then it could be something else like babesia. Are you taking any of the herbs for bartonella or babesia. They won't heal you, but it will help keep it from getting worse and worse.
If you are worried about your mind, the definition of insanity is doing the same thing over and over expecting different results. You are not getting improvement and there is a reason for that. Change your direction. Change your diet. Treat what is causing your symptoms. It isn't borellia.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
won't serrapeptase help?
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
One important thing to take into account is that babesia/proto/malaria cause sever hypoglycemia (low blood sugar). I had to eat protein every 2 hours including meat but while I kept treating with anti-malarials, my low blood sugar got better.
Boluke and serrapeptase was never enough for my coagulated blood. Injectable heparin changed things for me.
I am about 85% better.
Posts: 697 | From CA | Registered: Dec 2011
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posted
Thinking of you, LIP Posts: 431 | From New England | Registered: Dec 2011
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Had llmd last night. Agreed to work on hormones for 2 mos to see if thst could change anything. If I feel worse back on treatment. My hormones have battled me for life. He spoke with hormone doc and psych. I'm too numb, just going minute by minute, detox as much as I could and do ondamed. It's an amazing thing hope it's not too late for me.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
So sorry for your dilemma, Lyme in Putnam.
Something for immediate relief might be taurine in fairly high doses. It is an amino acid and should not interfere with anything else you are taking. It is widely available in caps pr powder/crystals.
The powder/crystals are tasteless and can be stirred into water or juice.
Taurine has been a great help to me over the last 25 years. It has even been used IV for severe seizures.
I don't have any research on it anymore but you can Google it.
Take care and remember all things do pass.
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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not logical just all wrong.
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