posted
I've come to this self diagnosis. I've have tender glands for several weeks. I've had pains in the back of my neck, and headaches. Now the pain in the back of my neck is almost constant. The air hunger at weird times, it all makes sense. I know no one here is a doctor; but could any virus or ailment or anything to do with lyme disease mimic leukemia
posted
See a good LLMD... sounds like Babs like Six said. Have you ever been tested for co infections.
Lyme and Co will give you all these symptoms.
We all talk about the air hunger with Babs, and we all talk about the head and neck hurting like this with Babs.
Very common with Babesiosis.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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posted
Yes. I never got headaches but that joint would hurt, bad. Chiropractic helped.
If you want to rule out leukemia, do. They have testing for it. But I did have that exact pain in that exact location.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Another vote for babs.
Have you been treated for it, yet? I can't remember.
It took me many, many rounds of babs treatment to get rid of it. But all the symptoms you describe fit mine exactly.
At one point, I even had hemolyzed (spelling) red blood cells.
But - it was babs. And it's gone now.
If you're worried, ask your doc to rule out leukemia.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
quote: headache in the back of the head? and pain in the neck where the head joins and goes down to the body? is that possible?
Nowhere is this muscle pain listed in the Leukemia link you posted.
Again - this is muscle spazm pain causing referred pain from MAGNESIUM DEPLETION. Lyme disease depletes your magnesium. Muscle spazms do NOT go away on their own, and this will continue to feel worse until you do something to intervene. This is not a cancer symptom.
Please don't let yourself go overboard about this.
The swollen lymph glands could also be from Bartonella
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
I have your same symptoms. It is scary. For me, testing revealed the cause of these symptoms to be Lyme, babesia duncanii, and two strains of bartonella.
Symptoms from these infections can mimic many other diseases. I had swollen and sore glands for two years before starting treatment, and the head/neck problems for much longer.
I hope your tests help you find an answer, and some direction for treatment.
Posts: 212 | From San Francisco Bay Area, California | Registered: Aug 2010
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posted
I barely slept last night because of my head hurting and neck/glands so sore and painful.
When I herx I have this horrible pain. Neck, glands... head.... I can't even lift my head of the pillow it hurts so bad.
Yet I'm here at work today, as I know it was a herx and I'll have it again tonight, that with the hot flashes, chills... sweats...
It's all 'normal' for babesia...... believe me, it feels like we are dying... but we are not per se. NOT CANCER.
I think I said to you before... STRESS is not good for us... you need to take what we say in here and with your test results.. and rest assured that it is a Co infection that you are fighting.. not cancer.
We're here to help you, but you need to believe in what you are being told.. esp. from your Drs/llmd's...
best wishes.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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sutherngrl
Frequent Contributor (1K+ posts)
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posted
Pain in the back of the head/neck area can = swelling of the brain. Very common with LD.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
quote:Originally posted by Clint31: I guess another question is... After two years of treatment can u still really herx? I haven't herxed in what seems like ages
Have you changed any meds recently? Added something? changed a dosage? Dropped something?
I herxed beyond the two year mark, so it's definitely possible.
And don't forget to add some magnesium, like the above person mentioned.
Sometimes even significant stress could set off a flare for me... with all the symptoms you're listing...
Hoping that you feel better soon, and that you get good test results soon so that you will feel reassured.
Hang in there.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
I was probably off antibiotics for 4 to 5 days before starting on them again... today was the first day of the burning in the back of the neck... and the day I happened to be completely freaked out the most about possible illness.
Lymph node pain has been happening for 3 weeks or more. Progressing into the headaches and neck aches now. Skin is burning. Felt weak when working out tonight
Lyme affected me so much ( I am only 20) and doctors thought I HAD leukemia. With Leukemia, its more of a cell problem. Your CBC would have to be all over the place (Like mine was). But, they had me do a blood smear, to rule out Leukemia, and Turns out it wasnt..... it was Lyme they found in the blood smear.
Lyme (Especially babesia and Mycoplasma) mimic Leukemia, I know from experience. Go to a internist, and request a blood smear. Its fairly simple. Just like any blood test. You find out in a week. It was SUCH a relief when my internist said I DIDNT have leukemia. Once I started LONG TERM antibiotics, only my white cell count is high and everything else is normal once again.
Bartonella and babesia causes sore lymph and SWOLLEN NODES. I have them all over.
Lymph Nodes also swell do to a clog (Infection)
Its pretty sad that I know all this only at 20, and I am a elementary major, but as you learn about Lyme, you'll end up educating yourself more then you would expect too! ;-)
But seriously, Request for a blood smear. Your doc WILL tell if your results, and can see Underlying Infections.
Good Luck.
-------------------- Stephanie, University Student.
Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT] Posts: 145 | From Idaho | Registered: Feb 2010
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posted
Clint31...I took a few minutes to read your blog and was saddened to read the journey you've faced so far.
Your dad sounds like an amazing man. Thank goodness you've had his support through all of this.
As for cancer, it is natural to consider the possibility when there is so much going on in your body. I cannot tell you definitively what you have or don't have. You know your body better than anyone.
I was recently clinically diagnosed with Lyme and Babesia. All blood tests were negative for both although my labs show something big going on in my body. My bone pain in my leg has been excruciating. In fact, the doctors thought I had bone cancer. My scan was clear.
In my case, my labs seem to reveal one of two things....Lyme or Cancer. I'm convinced it is one or the other. I'm trusting my LLMD and currently taking abx and Lariam for Babesia. She is convinced that my symptoms are primarily from Babesia.
I've had burning in the back of my head and neck as well as air hunger for over a year. Of course, multiple neurologists can't find a thing wrong with me. We believe it is from Babesia.
My 13 yr. old son had swollen glands for a long time. He has been treated for Lyme for a year and Babesia these past months. His glands aren't swollen any more.
I hope this information helps a little. Remember that each day is another day towards victory in healing. You will get better.
And for those in your life that didn't stand by you and support you during your darkest hour, they've missed out on the blessing of watching you become an even more remarkable man. No doubt your suffering will refine you and stretch you. Just don't give up....
Posts: 66 | From Northern Virginia | Registered: Jun 2010
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posted
To touch on the cancer issue, I had some borderline lymph nodes in size and was seen by an ENT doc and a hematologist. They both agreed originally to remove one of the nodes through surgery.
Both docs then changed their mind and the hematologist wanted me to get a PET scan if insurance would allow it. Insurance did and the docs decided the scan was better than taking parts out of me.
I definitely freaked out about the PET scan for a week or so because they are very reliable about finding cancers, or at least some false positive to make you think you have something. The hema-doc decided to go for the full body scan to make sure.
Part of what led up to this is very similar symptoms noted in this thread so far, some blood tests a little bit off, and the nodes. My situation of how I was feeling falls in line with other babesia sufferers.
I did the PET scan about 20 months ago. The PET scan requires you to drink a glucose mixture because cancer loves sugar and any cancerous spots would light right up. As with any test we get performed by a tech, it's hard to get a reading on what they see, whether it's good or bad. So any facial twitch from the tech makes you think they saw something bad and you are waiting for a doctor to come running in and tell you the worst.
Anyhow, the test was perfectly clear. I guess the relief of being cancer-free is reassuring but now I'm wondering how many rads I subjected my body to.
I have been feeling fine for the most part the last few months but today is a chest pain day. Could be GERD or it's some babesia acting up.
Posts: 194 | From Colorado | Registered: Nov 2008
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posted
I have been diagnosed with re-infection of Mononucleosis.
I am definitely feeling it. I ache and hurt all over. My skin even hurts. This is worse then when I got it in High School. Its interesting because my doctor said after blood tests when I was dx'd with Lyme that "I've had mono/ebv all along" indicating i never got rid of it but I did not feel this way. It's like I have brand new mono all over again
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