posted
I constantly feel like I have the flu with no relief. I have been taking claforan shots for a week now although I haven't worked up to full dose yet.
My question is does anyone else feel like they have the flu ALL the time? I cannot get relief. It is not a herx because I felt this way before antibiotics.
I have sore throat, stomach pain, head ache, eyes hurt, weight loss, no appetite diarrhea, ears itch, sweats and chills, nausea. Like a bad case of the flu. I also have hair loss.
I ask because I never hear of others saying they feel fluish. Just numbing and things like this. I have had nuero symptoms and eye floaters but the constant flu feeling is more than I can take because it's constant! I've had some low grade fevers here and there but nothing significant.
Is this really Lyme? Am I missing something here? Why do I ALWAYS feel like I have the flu?
Posts: 415 | From USA | Registered: Jun 2012
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Some of your symptoms sound like they might be attributed to bart and babesia. Actually, I had almost all of those symptoms when I first got diagnosed (I didn't have constant diarrhea though, just periodic). I have lyme, bart, babs and more. I'm no doc, but IMO, this sounds like lyme and company.
P.S.: I look and feel like I have the flu every time I herx. This is lyme and company.
-------------------- --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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posted
I always feel like I have the flu. My Dr. verified with my labs that I am the walking flu.
You are not alone.
Posts: 148 | From AZ | Registered: Sep 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
It takes aggressive lyme treatment for the patient to start feeling better. You say you have been taking claforan shots for a week and are not up to full dose.
So, you can't expect to feel better at this stage.
Are you taking any other meds for lyme disease and coinfections?
I looked up claforan in the Burrascano Guidelines (using its generic name), and Burrascano only talks about giving that med as an IV. So, I am not familiar with the way your doctor is giving it to you.
Also, your symptoms sound like a bad case of babesiosis. So, are you also being treated for babesiosis?
And, gut problems are generally bartonella.
Most of the top lyme doctors will treat the patient for lyme, babesiosis, and bartonella simultaneously. It is not unusual for a person to be on 5 meds at once. Does that sound like your treatment?
The most important thing a patient has to determine is whether or not they are getting good lyme treatment. If they are not, they will generally not get well.
If you want to list all of your meds here, we can help you assess your treatment.
I wasted 2 years with a doc who had me on only one antibiotic. 2 years on that one antibiotic. I didn't know much back in those days.
Then, I started educating myself. I started STUDYING the Burrascano Guidelines. It wasn't easy because that document was written for doctors.
But, once I understood what good lyme treatment looked like, then I knew that my treatment was woefully inadequate. I got some improvement with that one med, and then eventually I began getting new lyme symptoms.
I went and heard Burrascano speak twice, and I learned a lot at those talks also. Burrascano even answered a question of mine. I asked what he thought of a patient on high dose antibiotics who developed a new symptom--trigeminal neuralgia.
His response was: "If the therapy is inadequate, the disease will continue to progress."
That was it for me. I switched to a lyme doctor who followed Burrascano. He put me on additional meds, treated me for babs and bart, and in 13 months, I was finished with treatment. I was symptom-free in 8 months.
My final doctor was my third lyme doctor. If I would not have educated myself, I would still be sick to this day. Instead, it is over 7 years since I got rid of lyme and its coinfections.
So, all that to say that the doc is the key to getting rid of this disease. Can't emphasize that enough.
If you are not making progress, you owe it to yourself to educate yourself on what good lyme treatment looks like. Those who just sit back and wait for the magic to happen often find that the magic never happens.
You can look up your med (cefotaxime) by using the "Find" function. Just bring up the Burrascano Guidelines, hit Control+F, and then type in "cefotaxime" in the find box. This will show you everything Burrascano says about this drug--how it is to be administered, amount per day, etc. It is always mentioned as being given by IV, not by shots.
Some pages that mention this med are 12, 14, 19, 21.
I read in an old post of yours that you tested positive for lyme. A positive lyme test cannot be a mistake. You have lyme and most likely babs and bart also since you have been sick at least 4 years. Burrascano says that if you have had lyme for at least 1 year, you also have coinfections.
So, if you have been treating for a number of months and are not noticing improvement, you may need to consider the treatment you are getting.
Posts: 9931 | From Maryland | Registered: Dec 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I have flu symptoms. Most all the time. They get worse when I am flaring and herxing. Sometimes they are so bad that I cannot get out of bed.
My doc recommends a few things to help with the strong flu symptoms. 1: Drink fresh squeezed lemon water. 2: Try Alka-seltzer gold, take this a couple hours away from your antibiotics. 3: Make sure you are getting rest. 4: Glutathione, there are several different forms IV, nebulized, suppository, and oral.
Doing a combination of these things helps to reduce the severity of your fluey symptoms. Eventually treatment should take care of your symptoms for good.
Claforan is a great antibiotic for Lyme. I've been told that it has some activity against bartonella too. It really sounds like you are dealing with some babesia symptoms too. Make sure that your doctor is treating you for Lyme and all coinfections. That is how you will get better.
Also, it is common to feel worse for the first couple days after starting a new antibiotic. Sounds like you just started Claforan. It will take some time for you to see improvements, especially if you have been sick for several years. It's hard being being patient but we've got to do it. In general, my doctor likes at least 4-6wks to see if a new med is helping. Often we need more time.
Posts: 5237 | From here | Registered: Nov 2007
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posted
I also have flu-like symptoms, but not constantly. It varies from day to day. Some days, I have severe flu-like symptoms. Some days, I have moderate flu-like symptoms. Some days, I have mild flu-like symptoms, and some days I have none. Generally, my flu-like symptoms seem to vary proportionally to my headache/stiff neck. So, if I have a severe headache and stiff neck, I also usually have severe flu-like symptoms.
Posts: 177 | From Ohio | Registered: Aug 2012
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posted
Ok I am on two things. Claforan shots (actual claforan, can't get generic anymore) and questran (cholestryramine). Others are just vit d, magnesium and other vitamins.
I am going to Im you regarding this.
Posts: 415 | From USA | Registered: Jun 2012
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posted
have you had viral titers done along with mycoplasma. Taking antivirals can help with the fluish feeling and chills. this has been helping me, valtrex 2000-3000 mg along with scoopfuls of lauricidin a few times daily. Lyme and herxes cause viruses to come active.
Posts: 532 | From Texas | Registered: Oct 2004
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posted
dal123, No all I've had is regular blood work and western blot.
Sammy, is a flare separate from a herx? I have a flare and I'm sick forever!
Posts: 415 | From USA | Registered: Jun 2012
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Herxes are an increase in symptoms caused by die-off from being on antibiotics. Worst herxes are usually within a few days after starting antibiotics and then again about 4wks later. Some people herx constantly while in treatment though...
Symptom flares occur in cycles. They are periods of time where infection symptoms are worse than usual. For me, Bartonella and Babesia tend to flare at least once weekly. Most women tend to have Lyme flares near their menstrual cycles.
This is my real life, non-doctor explanation! Hope it makes sense for you Messa Posts: 5237 | From here | Registered: Nov 2007
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posted
Ok well I have bartonella and babesia symptoms everyday all day. I really really feel like I'm dying.
Does anyone know of a way to maintain weight? The longer I'm sick the more weight I lose and it's hard to gain it back. And with the diet it's just impossible for me although I have no appetite and have had none for 4 weeks now! And with the diet we have to follow its worse.
Anyway I'm just venting!
Posts: 415 | From USA | Registered: Jun 2012
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
No-one mentioned detox.
If you are not sure what that means, you can do a search or we can list it-
Detox supplements and protocols will help you feel better, are just as important as the meds.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Parasite treatment might help with the weight loss. Doesn't matter how much you eat if you have parasites. Weight loss is a symptom ... worry about the underlying problem and the symptom will go away.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Cholesyramine can trigger a cytokine response in Lyme patients. It made me feel HORRIBLE! The cytokine response is what makes you feel bad with the flu. The cholestyramine could actually be what's making you feel worse.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Maybe I should discontinue the questran? Most people I've talked to didn't like questran.
Posts: 415 | From USA | Registered: Jun 2012
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posted
I'm all confused. So I need to find a way to detox that doesn't cause a cytokines response? What detoxing methods have worked best for you? Was it the baths or just drinking water? Someone told me not to take too hot of a bath because heat makes you feel worse. And heat does make me feel worse.
I'm wondering how long I should give questran a chance. My dr told me it would probably constipate me but it hasn't changed that at all. The cramping and bowel movements are the same.
Posts: 415 | From USA | Registered: Jun 2012
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posted
I don't know whether you should stop it. It's up to you and your doctor. If it were me, I'd get off it a few days and see how I felt.
I used coffee enemas, epsom salt baths, and saunas as detox. In a crisis I would use bentonite clay, but not often.
I believe movement is also essential for detox. Think of a stagnant pond. If there's no movement, algae grows. A fountain creates movement, brings oxygen to the water, and gets rid of the algae.
Same with us. Movement brings oxygen to our blood, gets our blood pumping, and moves our lymph.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say that you: "need to find a way to detox that doesn't cause a cytokines response?" (end quote)
I think of "detox" not as an event but on-going liver support. Gentle movement, great nutrition are key each day. Also:
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