posted
I can't do this any more - into year 4, every infection, every form of therapy-IV, orals, accupuncture, neural therapy herbs.
I'm currently doing heparin to break up biofilms and just started a one week dose of factive-
My body has had enough-I am pretty strong but the disease is killing me. I don't know anymore is this is an unbearable herx or my body just saying give up- the bacteria win
So, so sad
Posts: 298 | From usa | Registered: Aug 2009
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posted
No funeral planning!!!! You have made it this far, you are such a strong person and your mission here is not done! There is a plan for you that involves being here!
I totally empathize with how you feel. I am in year 5. I did have one year off (sick but in denial) in the middle, and I just went back on antibiotics recently after being off of them for 6 months.
We need such fortitude. No one would fully understand what it is like to deal with this day in and day out. At times it is a full time job. And you have been doing it!
It is good that you voiced your feelings here on lymenet. Is there anyone you can speak to at home in person? And please get help in the ER if you are feeling really depressed.
Its easy to get under this mentally. Please hang in there and take lots of deep breaths. Prayers and positive thoughts being sent your way!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I was at the same place you are now 5 yrs ago. After 4 yrs of abx and 2 yrs of IVIG, I started treating for parasites.
I used antiparasitic herbs and salt/c and it saved my life. Turns out I had the Filarial worm co-infection as pictured on
Everything pictured came out of me after 6 mos of 16 caps a day of antiparasitic herbs and then staring salt/c.
Parasites/worms play a MAJOR role in Lyme disease and often are overlooked by docs and not tx.
Dr. K. treats all of his patients for parasites FIRST and Lyme SECOND. Google parasite symptoms and do a search on here for parasites.
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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Yes, I havew treated parasites, I 've done everything under the sun- I've had this for 25 years plus
I feel like I can't breathe now, is this a herx or side effect of factive (also have babs, maybe it's hitting it)
Posts: 298 | From usa | Registered: Aug 2009
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posted
I suggest you switch your thinking from planning your funeral to finding out whether this is a herx or side effect.
How about getting in touch with knowledgeable Lyme folks who can help walk you through this, like who would know about the side effects of starting heparin and factive, whether you're doing too much of them, whether you need to detox more, etc.
And if you really feel the need, to go the hospital if you need breathing help.
I also hope that you will continue to explore what other treatment options might be available to you.
Question - have you tried Buhner herbs yet? They treat Lyme and the co-infections - I'm reading about them now - I've tested two so far and like them.
Yes, the whole process stinks, but if you can improve your situation somehow, then it will become easier. It's the thoughts we tell ourself - they matter.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Thx - I'm back - I just looked up the side effects of taking factive, and it mentions breathing problems, and if it's bad, says you should seek medical attention and my sense is, if it's an allergic reaction, stop the drug.
Posts: 13116 | From San Francisco | Registered: May 2006
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by lyme987: I'm currently doing heparin to break up biofilms and just started a one week dose of factive-
Factive is pretty strong, isn't it? And breaking up biofilm means that the Lyme bacteria are more exposed to the immune system, so more would get killed, and you would herx more.
If you feel this shi##y, stop killing the Lyme long enough for your liver to catch up with detoxifying the poisons they leave behind.
The milk thistle gets the bile moving, and the others provide building blocks for the liver to make glutathione.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by lyme987: I feel like I can't breathe now...
Look in the mirror, are your lips blue? This would be a sign that there isn't enough oxygen in the blood.
When you take a breath, use the abdominal muscles. Put your hand on your abdomen above the navel, and the abdomen should rise as you inhale.
This gets air into the lower lobes of the lungs for better oxygenation.
Normal breath rate for adults is about twelve breaths per minute. If you breathe faster, you will exhale too much carbon dioxide, and will feel dizzy.
You may feel better if you go outside and breathe. Fresh air, more oxygen. Look up at the clouds and relax.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
It can make you so miserable but don't give up hope. You just have to find what you are missing. It is like a puzzle - some piece is missing and when you find it, you will get better.
Factive is such a strong drug - it alone could make you feel horrible. Are you taking it for bartonella? What are your primary symptoms now? Maybe you are hitting the wrong infection. I know you have treated them all but they can resurface if they were not eradicated.
I just added LDN, low dose naltrexone, to my regimen and I believe it is helping already - only two days, and I am almost symptom free. It creates a lot of endorphins which boost your immune system (as well as making you feel calmer etc). Of course I could feel horrible tomorrow but I am enjoying this moment of feeling normal.
I was extremely sick a few months ago and have been treating for nearly four years. I was feeling suicidal at times - not seriously to the point of planning or doing anything - but I was very discouraged and worried about my future. I expected I might not every get brain function again and would wind up in a nursing home.
Sometimes it feels like getting well is never going to happen but you have to stay optimistic and keep looking for that missing piece. I switched my babesia treatment around which helped. Then I added LDN. I hope that does it but who knows. . . we can only keep trying.
-------------------- 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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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Hi!
I have felt that way so many times. I haven't been to a LLMD yet. Have an appointment scheduled in a few months.
I just wanted to say that Stephen Buhner recommends Japanese Knotweed for Lyme in general and Depression and Cognitive Dysfunction, in particular. I take it now, and it has helped my state of mind so much. (It also helps with Herxing).
You can read about what he does at the website Planet Thrive.
Also, his book: Healing Lyme. But some of the herbs he recommends in the book he has slightly changed.
Oh, don't worry about radiation with Japanese Knotweed. It even grows in the U.S.
I recently added Green Tea and Red clover blossoms (not Buhners Herbs, but some I thought I would try). They have helped additionally.
But the Knotweed is really good.
Please don't give up. Please Please Please
Posts: 1358 | From Midwest | Registered: Apr 2009
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Don't give up. We are all in this together. We have to keep going. Sometimes I feel as if this is some sort of test and I try to think of it as a challenge. I still try to figure out the puzzle but I try not to panic. I always remember a time when I thought I was dying and then one day I felt better out of the blue.
As Carol pointed out maybe you are lacking oxygen in the blood. this can cause difficulty breathing and rapid heart beat. Some meds can lower your hemoglobin.
You will get better.
Posts: 2232 | From USA | Registered: Aug 2009
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Carol thanks for the breathing tips and yes I am taking loads of stuff for detox
Magnesium-transdermal fish oil milk thistle inhaled gluthiaone chlorella
nefferdum-I do have Low dose naltrexone-but my pain is so bad, I take tramadol for pain and you can't take both at the same time
My llmd just tested my immune system levels-they are low and always have been
I might be looking into IVIG
Thanks to all
Posts: 298 | From usa | Registered: Aug 2009
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Tell me what you have done for parasite treatment in full detail and how many weeks?
You need help with planning but not for your funeral. You will be able to dance again next year and climb a mountain.
Posts: 1834 | From US | Registered: Oct 2008
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Second what Rivendell says
Buhners suggestions are great for modulating immune system, thinning blood, and countering biotoxins.
Knotweed is great
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
I have been at this a long time. You're allowed to think this now and then, but promise someone close to you that you will never give up.
I promised my daughter I would never give up the fight. This was a few years ago and I always keep this in mind. It has saved me many a time.
There is so much more they know about this horrible illness than they ever knew years ago or even last year. Remember to make time for you, for fun. And, you know what? I think it's normal to feel like you do under the circumstances. I have felt the same way. Cry, give yourself a big hug, and know in your heart that no matter what, you WILL get through it.
And thanks to some really great people here. Many who give such good advice and a really good education on what we can do to help ourselves.I've learned alot here. Much more than my own LLMD will even tell me.
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
Please know we are all here for you with open arms and prayers.
I too have felt this way many times, but can't wait for the day we are all well and can help others get through this. I get so sad thinking we live in America and lyme is not covered by insurance, etc. We are all going through this for a reason and only God knows why.
Hang in there! It will get better and lyme will be just a bad memory.
Hugs and prayers, Jen
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Have you considered the salt/c protocol? It can be very powerful along with antiparasitic herbs. The KEY is with parasite tx is that you have to stay on it for at least 6 mos or longer.
Digestive enzymes along with the protocols mentioned above can dissolve biofilms. Please consider these options, because you can beat this.
We Care,
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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posted
I took Factive for 3 days, that was it. Too much to take physically. Couldn't eat, drink, sleep ... Pain was 100 on scale of 1-10. Just not worth it.
I'm on all supplements now, not antibiotics, and am about 50% improved.
I did the same thing, living will, trust, etc. Truly empathize with you too.
Dr. Bernie Siegal (author) of How to Live Between Office Visits helped me immensely. Power of positive thinking.
Please hang in there. Sending lots of prayers for you.
jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Please don't give up. I'm sure everyone of us has felt like it at times. This disease can be such a struggle some days.
While I've only been diagnosed for maybe three years, I've been chasing it down for 5. It's a bltch alright, but we'll get through this.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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but maybe they will still work even if you are addicted to tramadol, according to the first of these above links
Posts: 366 | From Europe | Registered: Nov 2008
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posted
Hello! I have not suffered as long as you have ,but I feel hopeless too! Yesterday, I received a blog post from Desiring God. John Piper spoke of trials , and God's purpose in them. It really encouraged me to hang on. I hope it will help
God bless, glad
Posts: 2 | From Columbia,MD | Registered: Aug 2010
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manybites
Frequent Contributor (1K+ posts)
Member # 33750
posted
Is there any way you can go to germany to kill the lyme .It will lift your symptoms even though you might still be sick after treatment due to babs /bart/blo etc.But it can definitely help you reduce this symptoms.I was there since 2005 .It has been 6 years and never thought I will make it alive . I never regret that I went there even though I am still sick with BABESIOSIS and BLO.
The excruciating pain subsidies if you reduce lyme.Mostly in the spine, head.I was frozen solid from babesia and lyme crawling from bed to the bathroom for 9 years had it over a decade and symtoms started 15 years ago.
Read about Bionic .The doctor W treats lyme before any other infection.Read about Brussels post,they are true.Please clean your parasites as well and do liver flushes to get the stones out and find some releif in back pain .
Posts: 1379 | From disable | Registered: Aug 2011
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