posted
Hello! I have never used this forum before but have read posts here and there. I finally decided to register today as I am very unsettled and looking for some advice. Some background information...I was diagnosed with Lyme in 2007 after getting a bullseye rash on my arm. I was treated with Doxycline and told I would need no further treatment. When my symptoms persisted, my doctor refused to persue it. Well here we are...4 years later. I have had symptoms on and off but have not gotten any doctor to take me seriously. About two weeks ago I have taken a turn for the worse. My joint pain is constant, I have dizzy spells almost everyday, and I am so tired I can fall asleep on the spot. I have also had migranes and stabbing ear pain on and off. I found a LLD, however they are quite far away and won't accept insurance and I can not afford what they want just for a consultation. So a family member recommend a local doctor who is very willing to run many tests and not pass me off. I go to see them tomorrow. However, the last three days my legs have been full of bruises without any recollection of injury, my joints ache so bad I can barely walk. I also have two single Petechiae on my palms. Has anyone had their Lyme mimick Leukemia? I don't even know how to approach my doctor without looking crazy...Any input would be apperciated. Thank you!
Posts: 2 | From Iowa | Registered: May 2011
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Hi, I have Lyme and my daughter is a Leukemia survivor... so I have seen both.
Can I ask why you think it mimicks Leukemia? All the symptoms you described are what I have so I would say they are more Lyme than Leukemia. I have unexplained hematomas the size of two silver dollars in diameter on soft tissue. I have had every test imaginable done and no one can explain why I get them. Although recently my smart husband mentioned that I typically get these bruises around my menstrual cycles... so I will have to bring that up in my next visit. Lyme is such an insidious disease so it can present differently on different people.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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posted
Well, I was thinking that because a relative said the bruising, fatigue, petechiae, and headaches are signs of leukemia. At this point, I am searching for anything that will help me feel better, though I am convinced it is Lyme that I hadn't been properly treated for. I know that Lyme can have so many different symptoms, I just kind of panicked when someone mentioned Leukemia. Hopefully I will make some progress toward an answer tomorrow. Thanks for your reply Posts: 2 | From Iowa | Registered: May 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
sounds like lyme and babs
not sure what the bruising isanyone else?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I have bruises alot. Lately they are appearing much more. I don't have leukemia, I have lyme & co.
I don't need to bump anything these days. But I know I am. Something is going downhill with me lately but it's not blood cancer.
I just don't know if the enemy is lyme, bartonella or babesia(didn't think I had these one until lately) raising it's ugly head and causing some new and concerning sx the last year.
You had a bulls eye rosebert, I'm sorry to say that mean Lyme Disease, no doubt about it. Only the very fortunate get a bulls eye and do one round of abx and are over it.
How many days of doxy did you take? If you told us you did 400mg daily for 6 mths, some of us might suggest it's another tick borne illness called bartonella or babesia.
But I would bet the farm you got about 21 days of 100mg of doxy?
We can ease your mind of cancer but we aren't doctors. If you think you might have cancer I would see a doctor. If your heart and gut says you still have lyme disease or some other tick borne illness a LLMD is best option.
You wrote LLN, that is a lyme literate naturopathic doc? I would have keep that one but find me a LLMD and go at it from 2 angles.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Easy bruising is a sign of Babesia, as are many of the symptoms you mention. Most of us have the 3 Bs: Borrelia (Lyme), Babesia and Bartonella.
And doctors do think we are crazy. You are best off starting with a LLMD, because you will end up there eventually. Do you have a sympathetic relative who would gift or loan you the money for the initial consult?
I know this is a scary idea, but most docs take credit cards. Your health is worth it.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Thanks Boxer, just what I need...another sx that is pointing to babesia.
I'm doing co-infection testing with Igenex again soon. I haven't been co-infected tested by Igenex since '02.
I've done the dum dum labs and they are a waste of blood and money. My PCP has agreed to draw and send off.
Add babesia to the list. I'm not crazy Boxer. Speak for yourself.
Thanks Boxer, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
map you know a neg isn't for sure a neg even at igenex, right..with cos.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
"I've done the dum dum labs and they are a waste of blood and money."
I've never heard anyone call a lab a waste of blood! HA!
Wait 'til all your co-infection tests come back negative, yet you keep insisting that you KNOW you have them! Who's crazy then? HA!
Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
I think simple anemia can cause bruising if I remember correctly. This can be caused by a number of pathogens...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
You, Boxer?
I realize neg co-infection testing isn't always right even with Igenex. But I've been tick bite, mite bite, spider bite since '02.
I just know I can't do the abx thing all over again. Abx is not my friend or healer.
I've given a couple gallons of blood in the last 2 1/2 months. Endro and PCP have drained me. It's not anemia.
I haven't thought of babs in myself since 2000-02. LLMD tried me on bart and babs abx but I was a walking talking toxin in those days.
Abx won't be on my agenda. But I've learned to never say never.
I'm blessed in that I have a PCP in my city and he watched Under Our Skin recently from me and he's got it since '99 with me and lyme but now he really gets it.
He knows I'm highly positive for HVV-6, myco pn and many other virus, sed rates, c-protein levels, Hashimoto's, my whole list of sx.
My PCP doesn't think I'm crazy Boxer.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I'm just teasin'. I don't think you're crazy.
And having a Lyme Literate PCP is like winning the lottery around here. You clearly did an excellent job of training him.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
the bruising is from nerve tension which kind o closes the blodd vessels... Don't worry you do not have leukemia!!!
Posts: 723 | From Montreal | Registered: Oct 2010
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posted
I know this is about three months late, but wanted to post in case others do a search regarding bruising.
I have not heard of bruising being a Babs symptom, so that is interesting; I'll have to do more research on that.
According to Dr. Burrascano, bruising is a BLO symptom:
"Joseph Burrascano distinguishes the Bartonella associated with Lyme disease as �Bartonella-Like Organism� (BLO) rather than the more common species due to the wide variety of symptoms and difficulty in treatment.
In his experience, BLO usually intensifies the symptoms of Lyme, especially those symptoms relating to the central nervous system, and needs a very custom treatment protocol.
The symptoms for Lyme BLO may include any combination of the following:
� red papules
� swollen lymph nodes
� fever
� chills
� headaches
� dizziness
� eye disorders
� sore feet in the AM
� hearing sensitivity
� severe pain in the tibia
� muscle aches
� sore throat
� profound fatigue
� agitation
� insomnia
� anxiety
� encephalitis
� gastritis
� lower abdominal pain
� rashes
� lumps on skin
� abnormal bruising
� psychiatric abnormalities (mild to severe)
Typically, a co-infection is suspected when treatment for Lyme disease fails.
Many times the correct diagnosis of a co-infection followed by aggressive treatment will create a break-through allowing a full recovery.
However, with BLO, the difficulty in positive diagnosis through lab testing is even more unreliable than testing for Lyme and requires specific blood work by experienced technicians. Therefore, it is critically important to find a Lyme-literate doctor who can distinguish the clinical symptoms and tailor antibiotic treatment accordingly.
But don�t be fooled. The diagnosis of Lyme and/or co-infections is just the beginning of a challenging treatment schedule that must be tailored individually, many times relying on trial and error to find the proper combination of medications.
Also, Lyme co-infections can be more severe and more life-threatening than Lyme.
Recent research (Emerging Infectious Diseases June 2007) points to the likely conclusion that Bartonella infects human organs by building microscopic fat deposits that can lead to death (in the case of heart infection) and permanent disability. Bartonella may also cause the weakening of blood vessel walls which can lead to strokes.
Unfortunately, even experienced technicians can be frustrated by the BLO seen under a microscope. Hemobartonella and Mycoplasma are often diagnosed due to lack of more sophisticated diagnostic tools and the wide range of species and variants.
Further complications arise due to the morphing nature of Lyme that becomes unique to each individual it infects based on that person�s DNA, immune system and over-all health.
Again, the key to recovery is finding a dedicated LLMD who is willing to try different protocols to find the key to each individual�s disease."
Posts: 217 | From Earth | Registered: Feb 2010
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