I am a 22-yr old man and have a daily diet that follows (ideally, I get most of the stuff usually):
2 large, organic bowls of salad 200g protein (strive for, has been ~100 this week) 2tsp Soy Lecithin 2tablets Source Naturals Higher Mind (one of the best supplements available for the brain, probably the best) Fish oil 800mg EPA, 500mg DHA x3 Jogging 5mi./day Doxycycline 100mgx2 1 cup of raw grains 2 litres filtered water Vitamineral Greens (best greens supplement) Vitamineral Earth (best fruit supplement) 2Tbsp. Bragg's Apple Cider Vinegar 1x50% in ~28vitamins & minerals multi
And I've only been getting worse and worse.
Does God hate me or what?
On top of that, I've had every big time prayer leader in the country just about, pray for me. In addition to countless others. And I've been sick 20 years with Lyme effecting my psychology so badly I am hands down THE worst illness case there has been in the history of the civilised world and most likely prior. It has been Hell on earth inside of Hell on earth. I've begged, and screamed, cried and pleaded for my life how many times...probably every day of my concious life, or close to it.
My life has been plagued by severe stress every day, and I am not sure how with all of the stress that my heart is still ticking beyond say, 12 years old, not 22 with all this screaming, and begging and pleading that's taken place in addition to feeling stressed every decision and move I made just about (severe anxiety).
Also, how many of you are Christians? Seems like even the worst cases on Lymenet are no longer here.
Shame suicide is a sin. I'd have killed myself upon my first breath if I could have. No one deserves a 'gift' like this.
Posts: 40 | From Maryland | Registered: Feb 2013
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
So very sorry you are suffering so much. Is doxy 100 mg 2 x a day the only medication you are taking? Not enough to go after these big infections. Diet helps, but doesn't get rid of this disease. Are you being treated by an LLMD?
Okay, well even with that said, I don't believe that abx alone can get rid of these infections. I switched to treating with antiparasitic herbs and salt/c after 4 yrs of abx were not getting me well.
The only thing that turned the corner for me was going after parasites/worms now being considered the number one co-infection of Lyme by ILADS.
Check out the symptom list of parasites at Humaworm and see if you can relate. Many on this board are having results treating parasites either with pharma meds or herbs and salt/c.
Check out the PARASITE WARRIOR SUPPORT THREAD. Hope this gives you some insight and hope that you can and will get well with the right approach.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
posted
It's possible that you're not on a strong enough anti-bacterial protocol - maybe 100mg 2x/day doxy isn't enough - are you seeing an LLMD? Have you tried other antibiotics? Have you tried other ways of treating Lyme, like herbs, etc?
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Sorry you are going through this nightmare. This disease is disheartening, to say the least. I have had improvements but am on a much stronger antibiotic protocol. Just my experience but may be worth discussing this with your dr. High doses of antibiotics in combination is what helped me turn the corner. You can get better!
Posts: 238 | From new england | Registered: Feb 2013
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
My heart goes out to you. You are certainly doing so much to try and get better! I admire your motivation.
The doxy alone may be pushing all the bacteria into cyst form. An over the counter supplement, Grapefruit seed extract (GSE) has been known to go after the cyst form of this disease.
Another combo that is helping many are two herbs - Samento and Banderol. They also go after all 3 forms of lyme and the biofilms. For more information on these, check out
The salt C that Gael mentions might be a really good idea for you - as it hits all forms of the bacteria and parasites as well.
The E book and the hard copy book are both around $30 and have such good information. Don't just start trying this protocol without reading the information first.
Some people see improvement with just a very small amount of sea salt and Vit C. It is dangerous to ramp up too quickly. Small and slow is better with this protocol.
You are so young and you have your life ahead of you. There are many here who understand your frustration and loneliness with this disease. Please stay connected here and you will find your way.
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I am sorry you are so sick. How long have you been getting treated? Were you tested for co-infections?
How long have you been on this dose of Doxy? I agree that it is not strong enough. Maybe you should get another opinion?
Hang in there okay? Good help is available, and you can get better.
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
posted
I have been getting treatment for over 2 years now. My doctor is Dr. S in NJ -- one of the best around.
Have been on this dose of doxy just recently.
Other than that, I have taken what he's told me to take antibiotic and supplement-wise.
I tried taking Vitamin C alone (i.e. high doses as individual vitamins or minerals that are sold are usually many times more than in say a daily multi), and it felt like I was going to lose my mind -- I felt like I was rapidly going downhill. Vitamin D also did the same; it wasn't like this years earlier, but Dr.S in NJ said it doesn't matter.
My biggest misunderstanding however, besides my wondering how I am still alive and didn't die due to stress 1000x over, is why God failed to answer years and years and years of my prayers which were essentially begs, pleads and screams -- I've prayed everything possible there is to pray. My name has been synonymous with illness and suffering like no one else's in the history of this planet as far as I know -- no case I've read or heard about is as bad as it was for me.
Yet my prayers have gone unanswered and me disappointed for years -- it's like I've been praying to a brick wall. Heck, I would have figured out if I were praying to a brick wall that I am just not going to get an answer. But I am just starting to realise what kind of denial this disease caused me to be in to think I was going to get anything from God, and yet I was so entirely dependent on him and didn't even realise it -- the very same God who created this piece of trash (a 'gift') where most people will face Hell on earth only to face Hell for eternity afterwards because they didn't believe in Christ as their personal saviour.
And then those that were born with everything necessary for a good life throw their's away and there is little to nothing remembered of them after they die -- might as well be a dead dog on the side of the road -- which is what's been happening throughout history and to this country especially for over 4 decades now, soon to follow with a historic economic crash worse than The Great Depression.
And this cycle (minus the economic crash necessarily), repeats itself over and over and over and over again as if to some psychotic tune and always has and always will -- there is absolutely nothing new under the sun and never will be.
Posts: 40 | From Maryland | Registered: Feb 2013
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Vitamin C alone without the sea salt will not kill parasites. Sea salt is antibacterial and antiparasitic and also goes after bb and the cyst form.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
posted
I think you are under treating. When I was on Doxy I was on twice that, plus Bicillin injections, and Tindamax.
You probably have the genes that make it so you don't detox well too.
I would talk to your doc about these things, if he isn't open to it maybe you should move on.
From a spiritual perspective haven't you learned some valuable lessons in compassion? I totally get the darkness a person feels when they take their own life, I also don't think that people with CFS or Fibromyalgia are just lazy. Being as sick as I was taught me a lot.
Sometimes I think that "God" wants us to empower ourselves and not just surrender to the doctors that are caring for us.
Posts: 845 | From Northeast | Registered: May 2011
| IP: Logged |
posted
200mg of doxy is not going to cure you. Have you treated coinfections yet?? You're bound to have bartonella and babesia. Nearly all chronic patients do.
PS .. are you gluten free?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
Taking Artemisinin (the main component of artemisia) 100mgx2 daily for Bartonella or something.
Posts: 40 | From Maryland | Registered: Feb 2013
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
temporarilyplagued: I hear ya about having so many people pray for you.
You are not alone. I know that doesn't help you in the moment when you are feeling the weight of the world on you trying to get better and constantly hitting dead ends.
I admire you because you are doing everything we are told we are supposed to do to get better. Even your diet is perfect (I cannot say the same for my own diet at times) The only thing I can see that may need to be changed is your antibiotic protocol. Maybe it needs to be switched up.
There are worse cases than yours and they have recovered. My husband is one of them and he is nearly well. He had these diseases literally eating away his leg skin, fascia and muscle. Tendons torn, concrete growing in his belly as his body was trying to wall off infection because Dr's had his immune system shut off with steroids and cellcept.
He couldn't think or remember a thing. His testosterone was 100 at 36, he had anemia. He had Lyme, Tularemia, Q-fever, Bartonella, Ehrlichia, Babesia WA-1 all lab confirmed...and with the right treatment...he is 90% well!!!!! Heck, he's at PT right now running on a treadmill!
So realize that you are not the worst case that has ever been. You are NOT a hopeless case. You will get better!
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
"And I didn't even know it until recently is how bad it was."
if you didn't know it, how was it bad???
I sympathize with your suffering, I really do. If you have no compassion for anyone else suffering, you're emotionally bankrupt. You aren't the first nor the worst, believe me....though it may feel like it to you.
Are there any support groups locally? Anyone in your life that you can talk to? Someone to manage your anxiety/stress?
Life is a gift, though it doesn't feel like it at the moment to you. I've been in that darkness/despair. It doesn't last forever. Instead of giving in to it, refuse to let it win. As your name says you are "Temporarily plagued"
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
posted
For those who believe you've had it worse or heard of someone who has ever been more ill than me, I'll list some of my symptoms later (provided I can remember) just to entertain you.
Posts: 40 | From Maryland | Registered: Feb 2013
| IP: Logged |
posted
From one Marylander to another - I'll keep you in my thoughts. We are all going through this in our various ways, that's why we are on this forum.
I understand your pain and frustration, this is a difficult dis-ease to deal with, manage and overcome. Do not compare your issues with others, your issues are real and should not be diminished in any way by others. We each react differently to Lyme and the protocols that we follow.
Hang in there, I really believe that we can all beat this dis-ease or at least try to minimize it's effects if we continue the long hard battle!
Posts: 250 | From East Coast | Registered: Jan 2013
| IP: Logged |
I'll pipe in here that everyone's hell is their own personal hell,
Very true.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Running 5 miles/day? Move this post over to Progress and Success stories. I'm not dismissing neuroborreliosis, because I know it is terrible and the symptom list is huge.
Once it takes your body too, it's a big hole to get out of. You need a more aggressive approach. Ask your doc about Levaquin to cross the BBB.
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
It sucks to be 22 and so sick. You are right to be mad. This is a horrible disease. Especially when it cuts you down in your prime.
I am more spiritual than religious. But in life in general I have found, the only being you can rely on is yourself.
When I have felt worse than ever, I have often stopped everything, drugs, supplements, nutrition drinks, for a few days. I think this helps clear your system.
I don't believe just cause you can run you are not suffering.
Just as my mother always said "you can't count other people's money" you really can't feel anyone else's pain.
All we can do is support each other as best we can.
Sending positive vibes your way.
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Praying for you!!
God does love you very much.
He can see the big picture when we cannot understand it.
There sure are so many in the same boat.
The good news is that if we are not healed on earth, we will be healed in Heaven.
I try to give my sufferings of all kinds to God.
I try to keep an optimistic attitude about it because I know that He suffered so much more for us.
Suffering creates perseverence and character.
It gives us a rare perspective and empathy for others too, that can be used for good.
Not to say that I wouldn't rather be healed than in all this pain...but until God decides to heal me, I will hang in there.
Again, I am praying for you...you are not alone.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
you're jogging 5 miles per day-- OMG!! well honestly i'd stop that first. you're overstressing your system. in my unlearned opinion that's too much. when i'm really down and sick i can barely make it to the dang mailbox.
i'm trying to at least walk a mile per day but i can't until it gets to at least 68 or higher and frankly some days i just can't, no way...
i'd recommend cowden cause doxy twice a day ain't cutting it. i learned that the hard way plus it makes you so sun sensitive and you don't need a chemical burn on top of things.
we've all been down. seems like i've seen the fires of hell with this disease. some of us have NO support, none. we just have to pick ourselves up by the bootstrap and pray to the Lord to give us strength.
find a good LLMD, if no one is close enough, read and educate yourself out the yingyang. nobody will do it for you. get buhner's book and others. get herbs, try going after parasites.
it will not be easy, never easy, but it can improve. don't know if it can ever be "cured" completely, but at least you can improve.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Paul prayed for the thorn in the flesh to be removed, yet God said no.
I have prayed for healing for years, and God has repeatedly told me, "It is not yet time."
God is not Santa Clause. He gives according to His Will and His Timing, which is always perfect. But it may not match up with what we want. It is an attitude thing...
God promises us a new body when we get to Heaven, whence from my hope comes. And to that hope I cling with everything that I am.
Without that hope, I have nothing.
Praise the Lord I can have that hope in Him.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
I think you are deficient in minerals. Your severe anxiety is due to low magnesium, which also causes the muscles to tense, twitch, and spasm.
Low vitamin D will prevent the mag from absorbing properly. And you need Boron too.
Randibear has a point, jogging five miles a day takes a lot of energy. I don't see how you're going to be able to gain any weight when you expend that much energy.
Regarding your diet, are you getting enough fats? Eggs, whole milk, butter, cheese, nuts.
200 mg of protein daily is an awful lot, 60 is the suggested amount. Which form are you using? Do you eat meat?
Are you taking B vitamins? B12 methylcobalamine, either sublingual or by a patch?
Coconut oil can be very good for digestion. One cup of raw grains daily is not going to be easy to digest, and ditto for all the raw greens. Have you tried digestive enzymes?
Are you eating cabbage? This can reduce the things the thyroid needs, and make your problems worse.
Constant antibiotics are killing the good bacteria in the intestines. How do you feel when you stop the antibiotics?
Which probiotics are you taking? Kefir has more of the good bacteria that you need.
Which fish oil are you using? Minami Nutrition MorEPA has 580 mg of EPA per softgel. (I'm taking four of these daily.)
Do you have pain? How are your joints? How is your sleep? Your libido?
Have you tried systemic enzymes? They reduce fibrin in the bloodstream, so that the white blood cells and find and phage (eat) bacteria.
Cat's claw will stimulate the white cells to phage bacteria. Wobenzym (systemic enzyme) and cat's claw is a protocol for Lyme suggested by Dr. Stephen Sinatra, a cardiologist.
Have you taken anything for the immune system? What are you doing for liver support? Undenatured whey will provide protein and the amino acids the liver needs to make glutathione.
�Yet my prayers have gone unanswered and me disappointed for years...� Can you meditate? Centerpointe is an excellent program for this, with CD's that put your brain into the right stage with no effort on your part. https://www.centerpointe.com/
I think your program is missing some essential points. Just doing more of the same is not going to get you anywhere.
Personally, I would stop antibiotics for a while and try to fix the nutritional deficiencies. An easy first step would be to supplement magnesium and get more good fats.
Many people here can give you pointers on which magnesium has been helpful for them.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
temporarilyplagued: we, this site of lyme friends is a Blessing,
To have One person to care about US. To have you here a blessing. both for US and YOU.
As, you awaken our compassion, OUR sharing, our screams... our losses, OUR daily nightmare. We share your grief and pains. You may be the worse case ever ! which we all doubt, millions of christians/people have died with horrid plagues for ever horrid story here even my own, don't touch the ice berg of suffering !! at 22 you have much to learn,embrace please ! life, someone told US all -life- a bowl of cherries - REALLY ? As, for your spiritual being, the body is GODs Temple Not yours ! your the maintance man. your mind set needs to be re started, where does it say in the Word That if everyone prays for me I am whole.? You seek much knowledge of God's Will. God's plan ? A man dosen't know what he is capable of -- Until he is challenged.. We have parents in their 80"s finding new challenges.. the flesh can bring Hell onto US all, on earth, then we leave our broken bodies and transform into spirit, rid US of this wrenched body.. We here BELIEVE you, where many don't(doc's etc)
As you have spoke of God.. you ! Obediance and Grace are great steps towards recieving God's Healing. study harder Please, don't judge me or others here.. As, we are not judging you, rather want you to be whole..again. I ain't a medical wiz, I ain't a preacher. I am a God Fearing man, and a very common man.. AS, many of US here are. sick. We all can pray daily and fast for you - Its you that need to show The Lord your serious and Love Him back, reach out and hug Him, keep doing if it 22 more yrs if need be. some of US have been doing it all our life. may He touch you and Heal, Jesus's Blood cleanses, those whom call on HIM.......YOU You have something, may be lyme or whatjamacallit disease... you hash over symptoms.. stop the hashing and get on with yourself, with recovery, perhaps never full again..many here wish we were you... We have lost everything, children, marriages, love, forget the material stuff, We are talking about suffering Great Losses. some entire families have abandoned US. this disease is known as the Great minic . everything is game on. everything. As, many here we feel as tho we have something living in US, an alien or we are voo doo dolls.
have you read the WORD, or have you depended on some one else doing it for you ?
we love you and are not picking on you - rather trying to help, when we all are in need of help here.. and share many options for relief so we can survive.. fun ?, no No Fun here.. we can find laughter, not happiness, no one is happy with lyme.
search God through your own being. . . as He is there before We get there ? waiting for US, saying where have you been, I have been here waiting for you ? God was there where were we ? if we use our bibles as much as our phones, we would be in God's Favor. there is no short stories here, sorry if I offended anyone.. God is listening.
posted
I want to say it again - doxy 100mg 2x/day is NOT enough to treat a Lyme infection! As people mentioned above, it can go into cyst form. You need cyst-treating drugs too.
Also, it's not clear whether you have any co-infections - for that, I always say look at a list of symptoms for babesia, bartonella and ehrlichia and see whether you think you match any of them or not.
My opinion is you need to be seeing a different, more aggressively-treating LLMD.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
I think you might look into Babesia and parasites. Also detox, juicing, infrared sauna, PEMF, swallow raw garlic slices in A.M., colonics, epsom salt baths, sleep.
You should look up anti-parasitic protocols.
I think you are doing too much cardio. Also Doxy causes depression. Look for a homepathic/herbal/naturalpathic doctor.
I had/have a ton of infections my head and heart fealt like they would burst. You should also find a lyme-literate doctor (possibly psychiatrist as you can try a beta-blocker like Atenolol, that helped my heart). My LLMD would not give me atenolol. I found a lyme literate psychatrist to help me get some needed sleep/thyroid/atenolol. He said 100% of lyme patients have thyroid issues. His wife has lyme and he has been a blessing. So has my homeopathic doctor who took courses with Dr. K.
My prayers are with you. I too had a ton of people praying for me. I suddenly had high blood pressure and I'm in my 30's. Like many of us I had a ton of issues.
Posts: 697 | From CA | Registered: Dec 2011
| IP: Logged |
I am also severely depersonalised (happened while I was stressing about things -- felt like something snapped in the left side of head, and as if the left side of my brain is currently missing or empty).
And my symptoms have been as follows: -randomly and suddenly falling asleep -very little comprehension while reading, listening if I could focus to save my life -obsessing about things with no end in sight, and noticing nothing else but what I was obsessing over (i.e. could obsess over a person's lip size and not even realise the guy had a face) -things along the lines walking into a room holding a knife and not realising it -Laying around for hours and not realising any time went by whatsoever (would happen all day) -couldn't remember what I just said to someone. -feeling lethargic all of the time -feeling very weak in my knees -getting moody easily -thinking only in vague terms (forgiveness, love, pain) and not being able to describe things beyond that, and thinking people get the same message across -- and me of course, not noticing that I am thinking in vague terms -each day something entirely unacceptable (i.e. lying, becoming more acceptable to me) while forgetting what happened yesterday. So my personal standards have been getting unthinkably worse and worse and worse. It's as if I have been decaying or degenerating. -thinking with my feelings -- feel something in the back of my head every time I go to make a decision, and as if my brain keeps 'feeling for it' or 'reaching for it' instead of me making a decision -- I just dwell on the feeling until it 'feels' right. I can't stop myself, it's automatic and starts every time I make a decision no matter how minor (moving a bottle of water).
All while on the diet listed in my first post. Some of these have went away, but the memory is still bad, and the 'decaying' the worst. I am getting so many blasphemous thoughts (unforgivable sin in my religion), it's as if they're normal. Another example of decaying; I would dress wearing only dress shirts and pants, and now, I am not even noticing myself wearing rags, and not even remembering that I EVER wore dress shirts and pants -- that's just one such example of this 'decay.'
I told Dr. S in NJ (my treating LLMD) some of this, and he shrugged it off or at least didn't prescribe me anything that helped with any of those symptoms.
I don't know what else to do, I am already on the best regimen on earth. I've had the biggest pastors pray for my health. And I've spent countless hours praying.
Also, is increased lethargy a sign of recovery? I've had a lot lately, and can't tell if I am getting better or worse overall.
Posts: 40 | From Maryland | Registered: Feb 2013
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
That is a spot-on description of Babesia duncani. You are better with words than you think you are! Or, maybe we just know that state because we've been there.
You need aggressive Babesia treatment, long term. If this doctor hasn't figured that out, it's time to switch. (I know who you see. Good doc, but sometimes switching for a new perspective is necessary.)
You are treatable. Sorry the prayers did not seem to come through for you. Maybe they are helping in other ways.
Please consider changing docs. At least ask for more aggressive Babesia treatment.
I have been where you are. You describe it so well. My Babs' symptoms are very mild now, and my brain is my own. Don't give up.
posted
I have faintly even heard of any of these drugs.
Someone mentioned flagyl to me. But was that for something else? Ugh!!!!
Taking vet drugs? Whatever, if it works, I don't care. Which do I take?!!!
Also, what is Artemisin even for? I am blindly following Dr.S in NJ's advice.
Also, how long? Because it feels that if I am degrading at such a rapid pace, that my mind is going to melt out of my brain very soon.
Posts: 40 | From Maryland | Registered: Feb 2013
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Antiparasitic herbs such as Parastroy and the salt/c protocol will also hit babs. Arteminisin is wormwood that is also in the parasite cleanses. You can order the salt/c book from Amazon if you decide to do that protocol.
Check out the current PARASITE WARRIOR SUPPORT THREAD. You would probably benefit by seeing a Dr. K. practioner who does ART testing if you can find one in your area. There is one in Pa.
If you are low on funds, the herbs and salt/c might be your best option and VERY cheap and VERY effective. You can buy them at vitacost.
There is a support group for salt/c called lymestrategies that you may want to check out. Also look at the symptom list at Humaworm and see if you can relate.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
What helped me is Zithromax, Mepron, BLT tincture, Pulsed Crypto and pulsed Artemisinin with grapefruit seed for 6 months. The pulse on Crypto was 4 days on 4 days off. Then I would rotate Artemisinin with grapefruit seed. You need to see maybe a nurse practitioner is cheaper or homeopathic. I also did 1 month of Septra with the above combo. On the art pulse you need to avoid antioxidents of any kind for the 4 day pulse. I started with a 2 day pulse because it was too much for me.
They had me on an art pulse of about 2000mg but they were evaluating my liver enzymes.
Posts: 697 | From CA | Registered: Dec 2011
| IP: Logged |
posted
temporarilyplagued: I just wanted to peek back in here and tell you I apologize if I came off snarky in my previous post. I'm having a rough time, myself right now....it's all perspective I guess.
I have been where you are at...a few times, in 5 years. It completely sucks to feel the way we do, and be reduced to the basics of human existence. You are too young to have to bear the burden of this. It's not fair at any age, but it's always the young people I feel the worst for.
I am on my third LLMD. I know it is a tremendous financial burden to try to switch doctors, but it might be the best investment you make. This is a complex disease, and all LLMD's have their own protocol. Trust me, if it isn't working for you with your current LLMD, you might end up spinning your wheels, getting nowhere, and paying out of pocket anyway. I also know about getting attached to doctors and putting my faith in them.
As far as the God question. I stopped asking God about my situation about 3 years ago. I pray that he take care of my children and my husband. The rest of it perplexes me.
You will get better. Take a deep breath, and try to think logically what advice you would give someone if they came to you with this same scenario. People do get better, but you have to try and be pro active when you feel up to it.
Lots of good suggestions here. I think the suggestion that you are over stressing your body, adrenals etc. with a 5 mile jog per day is valid. It's too much for someone at your level of illness.
PS I used to be just "daphnesmom" on this board in 2008 or so...and at that time I also lived in NY, in Dutchess county, the apparent tick capitol of the world. My Lymebrain forgot my password so last year I had to create a new user name....hence the "daphnesmom1". I've been through alot with this disease.
-------------------- "Yeah, I miss me too." Posts: 234 | From NY originally registered in 2008 | Registered: Nov 2012
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Everyone has posted good information. I agree that it sounds like many of your symptoms could be Babs related.
How long have you been on 200 mg of Doxy?
Since you are unable to switch doctors at this time, I highly recommend speaking to your doctor and emphasizing how bad you feel. Maybe you could suggest focusing on treating Babesia at this time.
Please know that we understand how scary and serious your symptoms are and that they are "normal" when you have tick-borne diseases. Some days you can only take things an hour at a time. It can be challenging going through treatment, but you can get better.
This is a great place for support and information.
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Your doctor is not one of the best around. I learned that the hard way....and lost precious years thinking he knew what he was doing.
He is known for undertreating. Everyone knows Doxy needs to be a minimum of 200mg twice per day. He is doing the same things with you that he has done with everyone else I know of.
And not treating you for your co-infections. He's never even seen the film Under Our Skin.
If you are going to go the abx route, there needs to be high doses, cyst busters and combinations in order to treat this dreaded disease.
Still, it's tricky and most don't get better permanently. That's why they tend to go the alternative route (as most good LLMDS do)...which encompasses many aspects of treatment.
It's necessary to address detox, deficiencies, parasites (this is the biggie imo), diet, exercise, mold, dental issues, heavy metal toxicity, etc.
Dr. S does not come close to covering all of these bases. Very sad. If you have to stay under his care, then you need to advocate for your self and become a partner in steering your own healthcare.
I would suggest doing a lot more homework here on Lymenet, then urging Dr. S to treat you more thoroughly. Bring him pertinent info to read based on highly reputable LLMDs, etc. It may help make him a better doctor.
posted
Sammi and Tammi, thank you for your responses.
200mg of Doxy for at least a month. Other antibiotics prior. For years.
And I will call him first thing Monday morning.
And Tammi,
What deficiencies? I told you my diet. In fact, if anything, I am 'overefficient' in perhaps multiple categories.
I don't have any amalgam fillings and am not poisoned by any toxic substances. Parasites? Possibly, so yes. Detox? Yes.
But what exactly? He suggested epsom salt baths last time.
Posts: 40 | From Maryland | Registered: Feb 2013
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
To learn the proper way to treat lyme disease, babesiosis, and bartonella, you need to read and STUDY the Burrascano Lyme Treatment Guidelines. They are here:
To see why you need to be on at least two antibiotics to treat lyme, see page 12-13, "Combination Therapy."
To see the antibiotics that treat babesiosis, go to pages 22-24 "Babesiosis."
To see the antibiotics that treat bartonella, go to page 24-25.
Virtually every lyme patient who has been sick at least a year has babesiosis and bartonella. So, it is almost positive that you have both of them. Every lyme patient I know in Maryland has babesiosis and bartonella. They are known as the "big 3." Lyme, babs, and bart.
Many have other coinfections also (like ehrlichia, mycoplasma, intestinal parasites, etc.). You can read about all of these in the Guidelines document. So, lyme is a very complex disease because it is actually numerous diseases. Each one has its own separate medications that treat it.
This is just too complex for a very ill patient to try to do on their own. You need a good lyme doctor to give you the medications needed to treat these diseases.
You can be tested through Igenex lab in California to find out what diseases you have. Or, you can be diagnosed through symptoms alone if you are with a very good lyme doctor.
You really need to figure out how you can get yourself to a good lyme doctor. Some people ask their church to help them pay for good treatment. Some ask family. Some put the cost on a credit card and pay it off for years.
This disease will not go away by itself. It only gets worse. So, you have to be creative and figure out how you can afford a good lyme doctor.
See all of the supplements that lyme patients need to take by going to pages 27-31. Try to take all of the required ones and the optional ones that help the brain/nervous system.
See the exercise a lyme patient is supposed to do at pages 31-32. Notice that it is supposed to be weight lifting, not jogging or any cardio type of exercise at all. This is emphasized over and over. No aerobic exercise is permitted until you are well. That is why you are getting the advice you are getting from folks on this board about your jogging.
See pages 34-35 to find out the diet you should be on. This is to prevent yeast from growing in your intestines. This is extremely important. You may already have yeast. See if your tongue has a white coating when you first wake up in the morning. If so, you have it.
So, each day, study a portion of these Guidelines. Then, find a doctor who follows them. That is how you will get good lyme treatment. This gives you the best chance of getting rid of this horrendous disesease.
Many doctors treat lyme disease, but only a few know enough to get rid of it for a person. That is what I learned in the 11 plus years I have been around this disease.
I got rid of lyme disease (and babesiosis and bartonella) 8 years ago by going to a doctor who followed the Burrascano Guidelines. So did 4 of my friends. Most of us were sick many, many years.
You have to become an educated patient with this disease. If you don't, you end up not knowing that the "lyme doctor" is giving you inferior treatment, and you go downhill instead of getting better.
I know. It happened to me. I wasted 2 years with a lousy lyme doctor. It is a VERY common story. That's why I hang around LymeNet even though I have been rid of this disease for so very long.
I would be happy to give you the names of a few doctors who will treat you the Burrascano way. Just let me know if you want them.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
How do you know you are not poisoned by toxic substances? Did your Dr test you?
I ask because I had high lead levels and never knew it until I was tested.
posted
For me, depersonalization was connected with low thyroid. When I started taking Armour thyroid tablets, 30mg 2x/day, I started feeling present again. My doctor explained to me that a sick body goes into hibernation, and taking thyroid means to wake it up again.
This is all physical and you need to get on top of it. We can help you here. Lots of good advice above. You can make a list of what people are suggesting you take, and take it to your doctor and tell him you want more treatment.
A good doctor does not shrug off symptoms. A good doctor diagnoses and treats. We are all different, so it's really a partnership btwn doctor and patient to find out what works for us, and to calibrate that.
If you want anymore testing, IGeneX testing can be done at 75% off through www.lymetap.com.
Some people do the Buhner herbs for Lyme and co's. They are cheaper. Buhner's book is "Healing Lyme."
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
You may have looked into the following things, but if not, they are areas to investigate:
- MTHFR gene mutations (search here for "methylation') - parasites - mold - co-infections - proper detox - heavy metals
And you might want to look into a therapist who can help you with some of the day-to-day emotional issues of being ill. Many therapists work on a sliding scale, so those with fewer resources pay less. It sounds as if a Christian-based therapist would be best for you.
-AnnaL
P.S. To answer your final query, I don't know about others, but I'm not a Christian. I also don't think suicide is a sin (a bad idea, sure, but not a sin) or that there is a literal Hell in the afterlife. But even if I'm not a Christian, I try to be as humble as I can, show compassion for others, and never claim that no one else could possibly have it worse than me.
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
| IP: Logged |
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
There's a top Lyme Literate Psychiatrist in NJ, who could help with meds for depersonalization, depression, anxiety, etc. I know that $$ is a huge issue, and that getting a good Lyme dr is the top priority.
Most good Lyme drs will rx meds for depression/anxiety, etc. while treating you for the infections, since they know what havoc the infections play on our poor brains. Of
course, they can't take the same amount of time with patients on this aspect, and aren't psychiatrists, but still they can help.
It would be definitely be best to see a top Lyme doctor, if there is ANY way that you can get help to do this. Can any family member help out financially? Or can your church help out in any way?
If not, others have given some good alternatives.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
posted
Every day I wake up, I am in survival-mode because 1. I can't think 2. I feel very good all over (some kind of positive euphoria like feelings are steady in my thyroid all day that just act as a mask the horrible reality), yet I know the reality of it, is I am holding on by a very thin thread because when the euphoria-like feeling goes away momentarily, and it very rarely does, my brain/thyroid/whatever is like a structure just ready to collapse, and when that happens, it looks like a good chance I will lose the ability to speak, walk, and feed, clothe, bathe myself. 3. I have to take care of myself, yet my thoughts are forcing me to depend on things if it makes sense -- they're making me think something is going to fall out of the sky and save me. Every day I wake up, I forget what I have noticed and the day before about my condition. 4. I believe people like some kind of simpleton -- whatever they say, I don't even question. And I don't even realise to question it, I just accept it. 5. This is just a glimpse of the problems I have been having. I wasn't even able to articulate what was hurting not too long ago, let alone even realise that I wasn't wearing clothing to _____ for instance. So me not realising things, i.e. I could be staring at someone for 15min. and not even know it.
I have to call Dr. S about this on Monday.
I had to write all of this out because I literally can't think, this is my organiser -- I don't realise any of my actions have consequences, and my 'thoughts' are all 'thought' outloud like some kind of savage. It's like I have 0 privacy. Everyone knows and sees what I am 'thinking' but me. I.e. if I wish someone harm in whatever's left of my mind but don't really mean it, they can somehow see that I am wishing them harm, but I can't see it myself.
I live with my parents, but they don't believe me about the seriousness of all of this, and they can't help me financially.
I give off the appearance of me being fine as if something is forcing me to answer that everything is good, and I answer that way. This has been happening for years. I am finally able to put it in words.
Posts: 40 | From Maryland | Registered: Feb 2013
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
temporarilyplagued: my best advice to you is to let your parents know your true reality. They can't help you if they think everything is fine.
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
I think you may be showing some symptoms of psychosis.
This can be caused by B12 deficiency. If you cannot get B12 shots, try sublingual tablets or a B12 patch. Look for methylcobolamine.
You need to take magnesium.
You need to take a higher dose of fish oil, one that's very high in EPA.
You have some insight into your condition, which is good, but you have not been able to interact much with people who are trying to advise you.
The chemicals in your brain are out of balance, and this affects your ability to function.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
posted
temporarilyplagued: What I hear you saying is that writing things out (here on Lymenet, for example) is one tool you use to keep thoughts/experiences organized, and that this is something very valuable for you.
This is wonderful insight into your current functional state.
I would suggest keeping a journal, either on a computer (be it a word processing document or a blog) or on paper. Try to write every day.
Document your current meds, diet, etc., along with your symptoms. That's the "just the facts" bit.
Also document how you feel, emotionally and spiritually, what thoughts you have, which thoughts you find intrusive, what is worrying you.
Document your successes, particularly if you find a new strategy or coping mechanism, so you'll remember the good things as well as what has worked to make things less bad.
This can then be something you can choose to share either entirely or in part with your LLMD, a therapist, or your parents, as a way of explaining just how bad you feel. It might also shed light on patterns, if, say, eating dairy is followed by a day of worse symptoms (just a random example).
You might also find the act of documentation empowering as you can flip through the pages and see each day, each data point, organized into manageable chunks.
-AnnaL
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
| IP: Logged |
posted
temporarilyplagued - I've been collecting my thoughts to be sure I include everything I wanted to say to you to help you. I will repeat most of what I wrote in the pm I sent you, addressing the spiritual and medical.
My heart breaks for you as I read your posts and I am so sorry for all your suffering. Please know there are many in the same or even worse situations, you are not alone.
God has opened a window for you by bringing you to Lymenet - take it and use it. Research all you can and know that we are here to help you, because we are all in this together.
God does not hate you or any of us. We are His children, His creation.
He died on the cross for all of us to save us, even though He didn't have to! He ultimately paid the price for all our sins, because He loves us.
I don't understand why there is illness and so much suffering in the world either and that has been, and still is, a centuries-old question. Unfortunately, we live in an imperfect world due to the fall of man and the consequences of sin.
God does not send illness, the Devil does. Satan is the one who hates us and is doing this.
Scripture tells us that "he is prowling like a lion, looking for the next one to devour." 1 Peter 5:8 . He comes to kill and destroy - that is his whole purpose.
I really think you are being under-treated by Dr. S in NJ and you need to find a new one a.s.a.p.! I have sent you some suggestions as to how to go about doing this.
Lyme bacteria cross the blood/brain barrier. You mentioned in your post that you are taking Artemisinin. That plus Mepron is the treatment usually used for Babesiosis.
Babesiosis can cause psychiatric problems - have you been tested for it or any other co-infections (IGENEX Labs in Palo Alto, CA is usually the lab Lyme-literate doctors use)?
Educate your parents and others by viewing the DVD, "Under Our Skin", for free on www.hulu.com. Read the book, "Cure Unknown", by Pamela Weintraub if you can (check your local library to see if they have a copy).
Listen to KLOVE, a contemporary Christian radio station, with affiliates all over the country. You can find one in your area by going to www.klove.com. They also have a prayer line at (800) 525-5683.
God bless you and hang on to the Lord with everything you've got. Keep these lines of Scripture in mind:
"I can do all things through Christ Who strengthens me." Phil 4:13
"Come to me all who are burdened and I will give you rest. Take my yolk upon yourself, and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yolk is easy and my burden light." Matthew 11:28
I also highly recommend you read (if you are able to) Joel Osteen's new book, "I Declare - 31 Promises to Speak Over Your Life".
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
temporarily:
Did you know that despite immense suffering, it's still possible to have a sense of peace deep in your soul and feel the warmth of God's love?
(Just a few months ago, I would have said that was hogwash. That I needed to be healed before any part of me felt better.)
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
If this site had a like button, I would "like" hopingandpraying's answer above.
Just to add that you can listen online to klove.com...go to the site and scroll over the heading "Music Room", then click on "Listen online".
Their music helps me daily to keep my thoughts in the right place, so I highly recommend it.
I think it also helps to watch videos of someone like Nick Vujicic, who was born with no arms and no legs, but has made such a difference in the world. Here is his site, and more can be found on youtube. Very inspirational!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
posted
Young and going through this, how awful. I am sorry for your pain. You will be in my prayers.
The brain fog is an evil that robs one of basic abilities to learn, share, communicate, etc.
Many have tried to give you advice and hope. Notice there isn't one just right answer? Our bodies are a wonderful, unique creation, and it will respond in ways that differ from others. You, your docs, and maybe some of the info here should work up a plan for you to try.
Our bodies do change and may react to our meds and supplements and diet differently, so adjustments may meed to be made.
You may want to consider a naturopath who does muscle testing. Perhaps some mold or flukes have reared up. Consider that and consider a zapper or other parasite evacuation protocols.
As for God, remember that even Jesus cried out that He felt forsaken. It's a human emotion, and it stinks. However, God is big enough to handle your being angry .
Now, for a bit of motherly and teacher advice. Look around your house, neighborhood, or city for ONE way you can help someone else in the next few days. We are hard-wired to respond positively when we do this. It can beanything
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
Topic Closed
UBBFriend: Email this page to someone!
Printer-friendly view of this topic