posted
I am so extremely ill that I don't want to live. I cannot do this anymore! I had a sore throat for 13 weeks and now I'm back to abdominal pain on n off for weeks! Non stop bathroom! I feel like I have the worst stomach virus xs 100! My dr and I suspected diverticulitis so I've been taking flagyl and cipro. Bad night sweats. Feel so hot and cold.
I thought also thought it could be pancreatitis but now the pain is low not high n my bloodwork is fine.
I know I've posted this before bit this is a nightmare! I don't know if or when to go to hospital. And what do you tell them? Hey I'm severely ill w Lyme? Ha!
I'm supposed to start mepron n zith soon but how? My gut! This seems like its just a death sentence and I need god to work a miracle here.
Please pray for my emotions. Thank you
Posts: 415 | From USA | Registered: Jun 2012
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Dear Messa, I'm so sorry to hear of how you are suffering. We have all been there. Totally understand.
When the same cycle of misery keeps continuing, I think that means its time to try something new. Maybe you need a new doc??
Regarding your throat, some idea..... Have you tried oil pulling? It's a great therapy. Check out oilpulling.com. I would do it daily. I really think it may be a help to you.
Also, you know about gargling, I'm sure. But what I've been told is that you need to gargle at least a quart of very warm salted water. A glassfull is not enough. It should take several minutes of constant irrigation. This may help also.
To me, major gut issues speaks of parasites. I had no idea I had such a monstrous infection. I've been treating for about 11 months and I'm still passing parasites daily. My symptoms have gone way down, and on many days I feel really good. Ups and downs are normal. But now I've been having a lot more up days. I wish I understood the importance of this infection years ago.
It's a complicated disease with many layers (detox issues, mold, parasites, heavy metals, deficiencies, etc.). I think finding the right practitioner who understands the complexities is key.
Sending hugs your way. Feel better. God bless.
Posts: 2238 | From East Coast | Registered: Jul 2010
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Please do not harm yourself. God is near to those who are suffering.
Is it possible that you could have C Diff?
Please listen to KLove to find some wonderful encouragement. Click on the link, scroll over the heading Music Room and click on "Listen Online". It's wonderful.
God loves you so very much. We all care about you too. Please get help if you are feeling suicidal. Please do not harm yourself.
Many prayers for you!!!
-------------------- 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
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posted
Thank you dekrator and Tammy. Maybe my problem is just a massive parasitic infection? My husband and I got the Mexico stomach crud on our honeymoon 6 1/2 yrs ago. A lot has happened since then.
My sister died, had mono, had a baby, mastitis, uti and tick bite. Feels as though I'm fighting a downward battle. My body is so weak.
I'm just gonna do the parasite thing. Please god let this be it! I did the Cowden protocol. Was it not strong enough?
I know there are so many of us suffering and we all need healing. Thank you for this board of support!!
Posts: 415 | From USA | Registered: Jun 2012
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
-------------------- 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
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posted
Thank you dekrator! That song is so sweet! The need the devil to get his grip off of me so I can withstand. Thank you so much!
Posts: 415 | From USA | Registered: Jun 2012
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posted
Thinking of you Messa! I'm thinking about doing parastroy too. And Dekator, thank you, I'm listening to KLove on-line right now. Hang in there Messa. I pray for God to give you HOPE.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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posted
Please note that some drugs will make you very depressed or suicidal. You should list your drugs.
Posts: 705 | From WA state | Registered: Jul 2011
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posted
Messa, you are suffering right now, and though I cannot tell you when it will change, I know you are cared for by many.
Keep yourself safe, and please, please tell some person in your immediate life how despairing you are right now. Be honest and ask for that lifeline of ability to call at any time of the day or night.
Medically, call your doc's office and ask for an appt immediately. Tell them it is an emergency. Which I think it is for you.
Ask about treating for parasites. Your doc may ask for you to do the stool sample, mine did. At the same time, he said he did it only to point out that he tried to confirm parasites, but he said he was sure I had them. The tests are only about 30-40% accurate, depending on the lab. Many false negatives.
Find a mantra, a song, a verse, a picture of a loved one, etc. as your anchor when you get into this dark place. Mine is the Serenity Prayer when the pain gets to that point.
People dealing with this rollercoaster understand, but it is difficult for others to understand. Please know you are loved and special. Life will get better.
Talk to your doc right away and get in to see her/him.
Saying a prayer for you.
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I've done a few rotations of these meds (in this order) -- Biltricide (4 days), Ivermectin with Pyrantel at night (2 weeks) Albenza (2 weeks) Alinia (2 weeks)
Equally effective for me has been anti-parasitic herbs. I've used Parastroy, Humaworm and Para A tincture. When going the herbal route I think it is particularly important to add salt/c. (Sea salt and powdered buffered vitamin c in equal amounts. You can just start with 1/4tsp each in a full glass of water before breakfast and dinner. This is good for the adrenals also.)
We keep switching things around so the bugs do not grow resistant. I cannot believe how much of a hold these bugs can take on us. Thank God there are tools to help.
Daily coffee enemas have been enormously helpful for me as far as detox and being able to handle so many months of treatment. It has become one of my favorite tools (believe it or not!).
Check out the Parasite Warriors thread.
Wishing you well.
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
Ok I'm really afraid! I am bleeding! Sorry tmi. Dear lord keep my organs safe!! I don't know if my colon can take any treatment!
I feel doomed!
Posts: 415 | From USA | Registered: Jun 2012
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Messa, I am so sorry you are struggling so much right now. Praying for you. Do you have Facebook? There is an FB group called "Lymie 24/7" that is designed to be sure someone is always online to talk to any Lymies who feel sad, depressed, or suicidal. Also www.lymefriends.org is another support place.
I lost both my brother and sister to suicide in the last year and a half. It's a horrible trauma to the ones who are left behind. You will come out of this; you will have brighter days, just hold on. If you are having trouble holding on, know that there are so many of us here to help you hold on.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Thank you. I'm really trying. Thank you so so much!
Posts: 415 | From USA | Registered: Jun 2012
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Messa,
I totally agree with Tammy about going after parasites!!! When I did with salt/c and antiparasitic herbs I had a mass exodus.
Google parasite symptoms and you will see blood in stools is very symptomatic of a parasite infection. Try and stay calm and focused if you can. I know...not easy.
Sending you many prayers and healing thoughts.
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
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Sorry you are feeling so poor. Concerned about the bleeding. This is bleeding in your stools??
Posts: 312 | From Utah | Registered: Nov 2010
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posted
The bleeding is bright red. I have hem so hopefully?? Please lord! Tmi sorry
Posts: 415 | From USA | Registered: Jun 2012
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Messa, it would be a good idea to ask your dr about prescribing an anti-depressant, if you are not already on one---or adding something to it, if you are. There is no harm or shame in this. It would be much better to get help in this way than to feel suicidal, understandable as those feelings are.
Of course, as people have said, get as much support emotionally as possible, too. Maybe you could see a therapist or counselor to help. there are ways to get help that cost little to nothing.
Plus, friends, Lyme Support Groups, LN, etc. Feel better! I know this illness is an endurance test that is beyond the imagination of anyone who hasn't gone through something like this. Which is why it's so helpful to talk to those of us who do know.
Posts: 3771 | From around | Registered: Mar 2008
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posted
I opened my bottle of ssri this morning. I have avoided taking something this entire year and doing all natural but things are serious now! I've gotta be able to deal with the trauma of all of this.
And I believe I'm suffering from a bit of post traumatic stress syndrome from watching my sis (I loved her, she was my matron of honor) die of cancer. She withered away leaving behind beautiful babies. Now here I am feeling like I'm in the exact same situation!
I had a dream last night that my son was falling and I couldn't save him. I woke up with a jolt!
Obviously I need help. I just don't know if emotional help will do any good if the infections are so rampant in my body.
I hate every minute of this crap. Now I gotta get to the gi doc and he's gonna wanta know why my colon is acting looks 70 years old when I'm just 34.
Can't tell him Lyme and babesia have ravaged it! Some people throw up. I have it out the other way. I believe this is how my body tries to detox? My gut has been under trauma for a year straight. Doubled over crying pain. Now blood and it is scary!!
Sorry I'm just going into too much detail now but my husband is great but doesn't understand that I cannot jump out of bed in the morning and run to my son. I know I'm the mom but I can't right now. Getting up is a slow process as this is when I'm feeling my worst. Then the many times to the bathroom. Ugh!
Ill stop now. It's very late. Everybody on here thank ya bunch! Prayers and words of encouragement very kind. Hopefully will hv a better morning than this morning.
Posts: 415 | From USA | Registered: Jun 2012
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Lord cover your dear daughter with your love and healing power
.We praise you and thank you ,even during this horrible illness.
Give her Sweet loving thoughts. Help her release any guilt or shame....it's the disease not us...
If she needs more mental health help,guide her to the right person.
If she is low in any mineral/vitamin etc. Give her and her doctor wisdom to check this completely.
We pray and ask in our sisters benefit, that you move in a mighty and powerful way.. heal Lord, heal...Amen & Amen
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
I am praying for you now to be led to a treatment than gives you improvement . I have been ill since 96 and used to have a DIFFICULT TIME standing up . I felt I had gravity pushing my body to the ground . I would get exhausted just standing up over the dishwasher for more than three minutes and would have to sit down.
I am not nearly well now , as I was DXed late - after 10 years.
BUT GOD has led me to things that have IMPROVED my function and life! I have some bad days , but also enjoy many things in life ! I am definitely better !
I had clinical depression long before lyme , and am thankful for the difference a low dose of prozac or zoloft ( generic now ! ) makes in my life . If your depresssion becomes an unending burden, consider treating it . Many , many of us do here and we are all rational !
Flagyl was a huge downer for me!!!!! Also , severe herxes , even now, can affect my moods . But overall I have a good life . Sometimes I get frustrated , but I keep asking God to guide me to things that will help me improve. I TRUST HE WILL. There are MANY MANY ways to attack this disease !
Most of us do get better !!!!
My daughter is 30 now , and her close friend , Susie, has a baby girl ( 9 mos !) dying of leukemia. When I feel frustrated and ripped off by lyme , I think of Susie . And I think of all the roads God has brought me down that looked insurmountable .
Please hang on ! You feel awful now, but there are many ways to deal with lyme ( ABX did not help me ) and to become much more functional .
I am praying for you . We have all felt moments of despair and hopelessness bec this is a huge battle. It is also very hard if you feel isolated and alone , and do not have adequate human connections and support . But do not judge the rest of your life by today ( a mistake I have made! ) .
I am asking God to guide you. He has to be my doctor and director of my treatment as I have no insurance . Frankly , the illness is so baffling that I am not convinced having a LLMD is a huge advantage . But I do know that I have been led to things that have improved my life .
I echo nonna's prayer that you are led to treatment that improves your function and life .
Blessings to you !
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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posted
The 13 week sore throat sure sounds like bartonella.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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posted
Maybe I have bartonella and babesia. How can my gut handle abx? But I've gone thru Cowden and no better. Actually maybe worse. I do t care what it is. I just want to get better.
Posts: 415 | From USA | Registered: Jun 2012
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posted
Cholestrymine causes constipation, and it binds to the Lyme toxins. It worked really well for me in helping to get me better.
I used to have really bad GI upset, going all the time, bleeding and burning. It got really bad for a while, I could hardly hold it.
I agree with you that that is how some people detox, looking back on things pre Lyme, when I had a big mold exposure, the same thing. When we went to the Museum of Art in DC (the moldiest building on earth) I had the most intense episode ever. I was stuck in a public bathroom for an hour.
My husband didn't know what do do with me, it just wouldn't stop! I barely got back to the hotel in time. Ugh, what a day.
Through the course of this illness I have felt like you do many times, it does get better, I promise.
Posts: 845 | From Northeast | Registered: May 2011
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posted
Thank you for sharing! I've contacted my dr. I know he will just say go to the gi dr. The will want to do a colonoscopy and this terrifies me. I had one three years ago. I didn't know what was wrong with me back then but the prep made all my symptoms worse!! I was almost blacking out!
I am sooooo much sicker now so I can see this putting me in the hospital or worse. But this is what drs do when you have gut issues. And the gi dr will not understand my limitations.
posted
I had one too, clean as a whistle. Lol. Actually not funny at all!
Posts: 845 | From Northeast | Registered: May 2011
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
My daughter also has diverticulitis . She takes marshmallow root herb and aloe vera and is improving greatly !
I have read MANY posts of people who can no longer take ABX , usually bec of gut problems. Sadly , many of those people were on ABX for years with minimal improvement . There are many docs using colloidals silver for lyme - Argentyn 23 and Meso Silver . I find quite a few posts with people stating they improved much more with silver . ( I just started it myself ) . I read posts at Curezone , MD Junction, and several blogs that were independent and saying they were getting genuine results with silver ( NANO SILVER - tiny particles are very safe ) and feeling better and starting to function again. That is why I am trying it - the stories were encouraging .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Messa - I hope you find answers and relief soon.
Regarding telling the doc -- I have found when I say something like "ever since I had Lyme disease all these weird things have happened and I haven't been the same since". I find uneducated docs are not bothered by that statement the way they would be if they hear us say we have "chronic Lyme".
I just recently started saying it like this and it has been very well received. It's almost as if they are interested in hearing it.
Best to you.
Posts: 2238 | From East Coast | Registered: Jul 2010
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Good grief! Given what you went through with your sister, on top of what you are going through, yes, I would say you
certainly DO need an SSRI or similar, plus emotional support in addition to medical help! Don't throw the baby out with the bath water just to stick with "natural" everything.
Make sure that they do every test possible for c difficile to make sure that you don't have that.
The suggestion to take cholestyramine is a good one to stop the runs + mop up the Lyme & co toxins.
Are you taking a LOT of top notch probiotics? Like VSL #3 DS, which is an rx that your LLMD can rx? There are
others, of course. Most of the good ones should be refrigerated. Take them twice daily.
It will get better.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Thank you all so very much! I'm taking probiotics once daily. 100 billion. Is it better to take 50 twice daily? Just started on some Prozac so I'm praying this will help.
Posts: 415 | From USA | Registered: Jun 2012
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posted
Messa, I could not tolerate the drugs like Flagyl, cipro, and most antibiotics, including all SSRIs.
I finally started on all natural herbs except for nystatin for yeast. I use ativan and tramadol for pain.
They helped and I didn't have the "I am doomed feeling with them". The drugs like flagyl and cipro made me have the same doomed feelings.
You may need to switch to most natural treatments until you can stabilize.
The natural treatment was not as harsh on my body and even though I herxed it was no the same horrific emotional feeling.
Lyme is slow growing so if you slow down or gradually stop the drugs you should be fine as long as you get your doctor to prescribe a new plan of action soon.
Take care, and Gods Speed to healing.
Posts: 620 | From Ks | Registered: Oct 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am sorry Messa that you are feeling so discouraged and sick. It is no wonder you are depressed with everything you have and are still going through - but this will pass. I couldn't tolerate fagyl much less the other drugs you are on and they are really hard on your gut.
As others suggested, maybe you should see another doctor. Whenever I did not make progress and became intolerant of the drugs I was taking, it always turned out I needed to treat a completely different infection.
What other symptoms do you have? If you feel you need to urinate frequently that could be bartonella or protomyxzoa. I think babesia can cause a bad sore throat. Do you sometimes get a "froggy voice" or a dry unproductive cough? That can be babesia or protomyxzoa.
I know you feel horrible but babesia causes terrible depression all on it's own. Do you have hot flashes, headaches or painful/cramping muscles especially in the thighs, buttocks or back?
How are you sleeping? Oversleeping, insomnia?
You have to be your own best advocate and try to determine what is wrong. If you are not responding to the drugs, you need to try something different. I don't understand why some doctors stick to the same protocol like a recipe for treatment without any consideration for symptoms - especially when it fails.
I have been to doctors like that. I walked away. One LLND insisted she "always treats Lyme first". I knew my lyme was dormant and I needed to treat bartonella and babesia. I did not take what she prescribed. I went elsewhere. I also got better.
Are you having 28 day flares? Borellia has very strong flares that you can't miss. Mine came with the full moons and lasted about 3-4 days. It was agonizing.
If you give up on anything, give up on this doctor. Start relying more on your own good sense and find someone else to treat you that pays better attention to your symptoms. Your primary symptom right now is depression. You need to attack the infection that causes it.
-------------------- 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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posted
Messa , I had a sore throat with hoarseness for an extended period of time and I went to an Ear Nose
and Throat doc who used a special scope to look at my vocal cords. I had "plaques" on my cords
which turned out to be yeast. Have you gone to the doc for a referral to an ENT? They have the
special scope that threads through a nostril and goes down to the vocal cord level. I didn't have
mouth yeast that I could see, so I didn't consider this possibility. Tell your gp that this
has been going on 13 weeks and you need to see a specialist.
Posts: 482 | From Oregon | Registered: Feb 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Otter, my hoarse voice was caused by protomyxzoa. It also gave me a dry unproductive cough and nasal congestion. It can cause a sore throat too.
-------------------- 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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