Cmon now, how likely is Babesia given these normal findings again on this set of labs?
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sixgoofykids
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I have babesia and never had an abnormal lab with the exception of a Western Blot.
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seekhelp
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But how when it goes after RBCs seriously?
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sixgoofykids
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I have no idea.
Maybe because it's a parasite and it does all it can to go undetected? Keeps it's presence under the radar?
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Lymeorsomething
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Seek, your ferritin looks OK (over 50 and not too high)...
My ferritin is constantly around 19... Still, I can't be sure of babs because my hypothyroid issues could be lowering ferritin levels...
How long have you treated for babs? Maybe it's not your main prob...
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seekhelp
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I treated Babs weakly for maybe 4 months total. The real issue is how likely is it I truly have this and is it worth my time to continue pursuing Babs treatment if the likelihood is low. I don't like taking anti-malarials for fun. I want proof this clinical Dx is accurate in some fashion. There has to be some little bit of evidence either direct or indirect to substantiate my Dx. Logically, it doesn't make sense to have pefect labs and a disease like that.
These are horribly toxic drugs and herxes could be side effects too. I don't forget that when taking things like Mepron, Malarone, Quinine, etc.
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Hoosiers51
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It could be infecting so few RBC's that it isn't having an effect on those numbers. Those numbers don't need to be abnormal to confirm a diagnosis.
I have had multiple positives on babesia tests (not all through Igenex either) and I have never had those values come up abnormal.
I don't have some kind of subclinical, festering for years babesia....I got very ill after I was infected. And none of those values were abnormal.
If you really want to know if you have babs, have you tried artemisinin? That should give you an idea. Otherwise, do something to provoke it (like an herb), then retest.
Those are the two ways I would attempt to prove it. I wouldn't bother looking at those values...it tells you nothing other than your parasetemia isn't incredibly high....which I wouldn't expect anyways with most of us....it just doesn't usually get *that* bad where we need blood transfusions, etc. People who are severely infected can need those interventions.
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Hoosiers51
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Also, Mepron and Malarone are not horribly toxic!!! Don't know where you're getting that. Malarone is approved in some countries for pregnant women to take as malaria *prevention*, not even treatment. It's one thing to say, "you can take it to save the mother's life." but it's another thing to say it's safe for prevention even.
It doesn't do much harm to the human body unless you have something unusual wrong with you like really bad mitochondrial exhaustion.
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I took artemisia for a month and then the herx hit. I couldn't even walk. It was awful. No doubt in my mind, and my dx is clinical. Can you tell me about it lowering ferritan? My iron/hemo is always super, super high, and my ferritan is super, super, low.
My little guy has low hemo.
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TF
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I was sick as a dog for 5 years. I went from internist to internist, gyn to gyn, then endocrinologists, looking for a diagnosis. I spent 5 years doing this.
All these doctors did standard blood tests on me and they all came back normal. How can somebody so sick have normal blood tests?
So, these docs told me I was normal. I was not sick. Get it? They yelled this at me. They said my blood work could not be more normal.
Finally, I went to a doctor who thought I may have lyme disease. He tested me for lyme disease through Quest or LabCorp and the test came back positive. (I was fortunate.)
Eventually I found a lyme doc who sent my blood to Igenex and it came back positive for babesiosis and bartonella also. (Again, I was fortunate.)
I know I had babesiosis because one of the tests that Igenex did looked at my blood through a high-powered microscope and saw it. (See, that particular test isn't done by any of the docs I saw for 5 years.)
Also, I had a weekly flare of babs symptoms as soon as the doc began to treat me for it.
So, how did I get all these normal blood tests all these years?
Some time ago I read an article by a doctor who I believe was from Canada. He told the very specific tests that a doctor would have to order to show an abnormal blood test result for the lyme/babs patient. He told other types of tests a person should get to prove other aspects of disability from lyme.
He was telling lymies how to prove medically that they had physical abnormalities that were debilitating. This was so they could get disability claims approved. He named or described the tests that would show what these diseases were doing to the lyme patient's bodies.
These are tests that doctors would have no reason to order except if they knew lyme and cos and knew what they did to our bodies and wanted to help the patient prove disability with medical tests.
So, too bad I can't find this article now to show you, seek, how this can be the case. But there are plenty of us out there who got told how normal they were and how they were not sick for years all because the standard blood tests do not detect what lyme and its coinfections are doing to our bodies.
I believe I remember that one of the blood tests this doc talked about was one that would count the number of mature red blood cells versus immature red blood cells a person had in a blood sample.
If you have babs, your mature red blood cells are getting destroyed by babs so the body is constantly making new ones to replace them. You will have a normal amount of red blood cells (total red blood cell count), but the ratio of mature to immature ones will be off. You will have way more immature red blood cells than a normal person should have--indicating that something is indeed happening to your red blood cells.
If I'm right on that, that is one example of an existing test that can show something is wrong in your blood, but no doc is ever going to think they should do this unusual test. No doc except a lyme expert trying to help a lymie prove disability.
The immature red cells cannot carry oxygen like mature cells. So, by this ratio being abnormal, the person can prove that their blood cannot carry the needed amount of oxygen to all the cells of the body. Hence the fatigue, etc. experienced by a person with babesiosis. This is what a doctor could argue on the patient's behalf.
By the way, this test would have to be a visual exam of the blood sample, if I remember correctly. Immature red blood cells are not the same shape as mature ones. A technician would have to count the immature ones and the mature ones and report the ratio.
The typical doctor probably has never ordered such a test.
So, it is logical that you can have these diseases and have "perfect labs" as long as all the doctor does is the standard labs. None of the standard tests doctors think of doing detect the damage these diseases do to us.
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MariaA
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three's also a theory that it mostly hangs out in the bone marrow rather than in red blood cells like malaria does. I can't find a reference to this but apparently a few LLMD's believe it due to one finding it in biopsies or something? good luck, rumor spreader Maria
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springshowers
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Seek
I hope you can find a good doctor to give you more guidance. You seem frustrated and always trying figure everything out on your own. Things are not always so black and white.
I hope you do find someone to really help you with all this.
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lymeberry
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My friend's LLMD told her babesia hangs out in the brain and in the spleen.
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Leelee
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My blood tests never revealed anything abnormal that could be related to Babesia, but I have it.
My LLMD called my results from Igenex "weak positive".
My most obvious symptom is the closing of my throat; the feeling that I am being strangled or might choke to death. When I started on Zithromax and artemesia annua that feeling increased substantially so I feel that was confirmation.
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Leelee
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seek,
I forgot to mention in my previous post that I also have the bruise-shadowy patches on the nape of my neck. My LLMD said they are indicative of Babesia.
And, as I mentioned before, my blood work has generally been pretty normal.
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seekhelp
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Wow, this is very enlightening information many provided and I thank you. I guess I have a TON to learn.
TF, I would LOVE to see that article from the Canadian physician. Why on earth can't most LLMDs take that approach and actually help us try to prove disability like that? That bothers me so much.
Most docs I see, including LLMDs, are happy to dismiss or call it a clinical Dx. THey care less about proving how dehabilitating it is to their patient and helping disability. I think it should be included as Lyme/cos ruin lives.
My free plasma hemoglobin testing shows 'premature destruction of red blood cells', but the total RBC count is fine. Co2 is always elevated too. Hmmmmmmm?? Eos is elevated, bilirubin is elevated. All docs, except my very inquisitive ID doc, say these are meaningless test results and no worries since my CBC diff and MBC panels are A-OK.
Why bother going to medical school if you're just going to be a puppet repeating the same thing. Don't they teach autonomy in school?
It's a seriously sick messed up medical system at times.
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seekhelp
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It's very strange. Docs say can't be Babesia. Started back up on Biaxin/Plaquenil today and now lots of air hunger. Very uncomfortable. Terrible fatigue to for 2 days.
Maybe coincidence?
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Leelee
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IDK, seek. Air hunger could be Babesia, but it is impossible to tell for sure, isn't it?
All the unknowns with these diseases is enough to make one crazy!
BTW, I just noticed that you are located in Antarctica. Did I read that right? My gosh! I can't imagine all that cold weather.
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TF
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Seek, the lyme docs are more concerned with getting rid of your lyme and coinfections than trying to prove you are disabled for a disability claim. They want to heal the patient!
I believe that is why not many of them have taken up this line of work. For some reason, this Canadian doctor, however, got into this area. I believe he said he had some long-standing lyme patients who could not get well and that is why he tried to help them in this manner.
Hey, if the doc gets rid of your diseases, you are not going to be approved for disability. My doc got rid of my diseases. I like that a lot better than getting my disability claim approved!
So, perhaps now you will see evidence of babesiosis in your blood tests. In the scenario I described, the red blood cell count is fine, but the patient is suffering from premature destruction of red blood cells--a condition known as hemolytic anemia.
But the docs don't consider that you have hemolytic anemia since your CBC is fine.
Since most docs know nothing about babesiosis, they don't know what to make of this test result, so they throw it away. But you know that this is precisely what babs does. It gets inside our red blood cells and explodes them!
"hemolytic anemia anemia caused by the increased destruction of erythrocytes which may occur in the vascular system--intravascular hemolysis, or due to phagocytosis by the monocyte-macrophage system--extravascular or intracellular hemolysis. It may result from incompatibility (see alloimmune hemolytic anemia of the newborn), from mismatched blood transfusions, from poisons such as copper, organic agents in plants such as kale, from nutritional deficiencies such as phosphorus and from protozoan infections such as babesiosis."
And, "Babesiosis is infection with Babesia sp. Infections can be asymptomatic or produce a malaria-like illness with fever and hemolytic anemia." (from the Merck Manual: http://www.merck.com/mmpe/sec14/ch186/ch186c.html)
It all fits together with the other blood test readings that you mentioned and your air hunger.
Statistically, most lyme patients have babesiosis. See what Burrascano says about this:
"It has been published that as many as 66% of Lyme patients show serologic evidence of co- infection with Babesia microti." (p. 23 of 2008 Guidelines)
If 66% show serologic evidence of Babs microti, what percent of lyme patients must actually have it?
It keeps coming down to the same thing--only a good lyme doc knows anything about lyme coinfections.
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seekhelp
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I can't argue with you TF. You hit the nail on the head. It sounds like it's time to buy some Art and give it a go. If I react as expected, I try to hit it harder and see if my LLMD buys into Dr. B's protocol. It may be a tough go for the LLMD, but I'll push.
Regarding disability, of course I want to get well and get back to work. BUT, when patients of the LLMD say it took 3-4 years to hit remission. If history repeats itself, I'll be broke, out of a job, homeless, and hopefully still have a decent marriage. Time is of the essence and LLMDs don't get that many times. That's why they need to be realistic that their prospect of long-term cash flow by the low and slow method is our cash loss and financial / personal devastation.
By the way, never ever had a fever, but do have chills. I don't have night sweats at all, but did when I first fell ill in Sep-07.
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TF
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I never had night sweats or chills either, but I still had babesiosis. I even became symptom-free without treating the babesiosis. However, if I ever stopped meds, within 2 weeks, I was just as sick as I ever was.
People should take note of this. Burrascano says to consider the possibility of an untreated coinfection in the patient that continually relapses. That was me.
Then, I went to a Burrascano type doc and got all my diseases diagnosed and treated and I was done in one year. Many people are. And, I had lyme and company at least 10 years.
By the way, good lyme doctors who will not treat aggressively (as per Dr. B) are doing that to keep from getting hauled up on charges by the state medical board and having to go broke with attorney's fees defending their medical licenses in court for years. (But, don't expect them to tell that to a patient.)
This is what Pam Weintraub says in her book "Cure Unknown." Just get it from the library and read about the last 10 pages. That's where she says this.
She says that many lyme docs in this country, especially in the northeast, have stopped treating aggressively. The only patients who can get proper aggressive treatment now are what she calls "made" people. These are lyme activists, someone who has written a book about lyme (like her), or someone who is the head of a major lyme organization.
She says that she and some other lyme leaders were sitting around talking about this and they all agreed that they and their immediate families can still get proper treatment, but if they send a friend to that same lyme doc, the friend comes out angry about the less than aggressive protocol the doctor is prescribing.
Weintraub says that the docs will treat "made" people aggressively because they trust that, no matter what happens in treatment, that person will not file a complaint against them.
So, it is not about lyme docs trying to drain lyme patients of all their money using the "low and slow" method as you call it. It is about lyme docs just trying to survive in today's complaining, litigious society and the hostile medical climate toward aggressive lyme disease treatment.
I suggest that instead of trying to push a lyme doc to do something he doesn't want to do (which hardly ever works anyway), you instead find a doc who will treat you the way you desire to be treated.
From the North Pole (the one in Anatarctica) who knows how far you may have to travel to find such a doc!
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If you take artemisinin, be sure to pair it with biaxin or zith. Otherwise, you will become resistant to it VERY quickly.
I never had sweats either.. just chills .. and they were not severe.
My worst babs symptom was EXTREME fatigue.
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seekhelp
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Just someone tell me they got rid of their stiff neck with successful Babesia treatment. If I can't alleviate this and the muscle tightness, I just don't care much honestly. These are dehabilitating me from my desk job. It's terrible today again.
My ID doc, who treats hundreds at minimum of Lyme patients, says he doesn't have ANY other patients who have my musculoskeletal issues. This made me think if I'm barking down the wrong tree.
My neck is popping like rice krispies on this Biaxin/Plaquenil combo. Sometimes, I'm asking myself why bother?
TF, that sickens me that LLMDs do this to patients and only provide adequate Dr. B-type treatment to 'elite' type people. Total BS. CHARGE ME LESS THEN!!!!! I'll sign forms. I don't want subpar treatment that doesn't result in cure/remission for their own financial/legal security. They are not doing anybody any good operating like this. If Pam W says it, I believe it. All, from the richest to poorest, from the most educated to sickest individual w/cognitive abilities deserve a chance at a normal life agsin.
Why am I considering Art on it's own. Should LLMDs be pushing from day 1 to take this if they clinically Dx Babesia? This whole situation is mind-boggling. I was told well sure you can try it if you'd like w/no dosage recommendations, duration, or info stating it must be taken with a macrolide Abx.
I'm sorry for my frustration, but it's hard to swallow all this at times.
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Leelee
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quote:Originally posted by seekhelp: Just someone tell me they got rid of their stiff neck with successful Babesia treatment.
I may have been extremely lucky but shortly after I started Dynacin and Zithromax my neck symptoms abated rapidly.
Prior to diagnosis and treatment I went to a chiropractor and massage therapist once or twice a week for two and a half years with no relief.
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Hoosiers51
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Stiff neck is a classic LYME symptom. VERY classic.
It got it almost immediately with Zithromax plus Plaquenil and it lastest probably about 10 days, but that combo seemed to work fast and quick for me in the beginning.
You are on Biaxin plus Plaquenil, which is probably an even better combo for Lyme specifically than Zith/Plaq.
If I had to guess I would say it is killing Lyme or bringing it out.
Maybe this can be due to Bartonella too, but my inclination is that it is Lyme, because it makes the short list of classic Lyme sx, and Biaxin is one of the best abx for Lyme, Plaquenil makes it stronger.
This doesn't mean anything as to whether you do or don't have babesia. As TF said, babesia is common among Lyme patients.
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Hoosiers51
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About artemisinin....I don't know if it is proven that it must be taken with a macrolide....
Artemisinin WILL loose effectiveness in the body on its own after a few days. That is why people pulse it. But I wouldn't take any anti-malarial agent alone (see below...you could use an herb or other stuff maybe, just not ALONE). Even when I pulse it, I usually am on something else that would at least have some minor effect on protozoa.
Whether or not a macrolide prevents the 3 day thing (it literally becomes useless on the 4th day) from happening, I don't know. Knowing how much the effectiveness nose-dives after a few days, I choose to pulse artemisinin whether or not I'm on a macrolide.
That is why many LLMD's say, 3 days on, 4 off.
Artemisia might be different. That might be okay everyday, I don't know.
Personally, I would just take *something* else with it. Biaxin is probably fine since it is a macrolide. Another babesia herb is probably okay. I could even justify something like doxy or mino if you are only trying to "double up" and not do art alone, because doxy is used for malaria prevention. (look it up...this isn't secret knowledge)
But if there is some kind of magical power Zith or Biaxin specifically have, then I guess I would go with that, but I have not seen anything to that nature that compelled me to NOT do art without them. I try to do art with one of those two, but if I don't, oh well. But I still pulse either way.
Also, in Dr. B's latest guidelines, he says that artemisia should be taken with Mepron or Malarone, not artemisinin. I wish he would have said why---if one actually prevents the other from working, or if it is just because he is worried about liver toxicity, etc.
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seekhelp
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Hoosiers51, did you come out better on the other side after the 10 days of torture?
Basically what is happening is every muscle in my body hurts and is very spastic. It's not cramping, but it's hard to even hold a phone up to my ear.
I just really don't understand Bartonella well at all and what it does except for all these crazy pysch symptoms people mention here a lot.
I wonder if the muscle pain/tightness occurs when killing Lyme or is this a Babesia-only issue? This stupid guessing drives me half-insane. lol.
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Marz
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My LLMD wouldn't treat for babs because I didn't have the night sweats and was negative on Fry test.
Also, one of the prescription drugs required monitoring for liver enzymes periodically and she wanted my PCP to do it since I couldn't travel to her.
PCP didn't "know anything about babesia" so he wouldn't prescribe it or monitor.
When I found out how expensive the drug was I didn't mind. Didn't seem right to be spending that kind of money either by me (actually couldn't afford it myself) or insurance for something I didn't know I had.
That was a year ago. Still wondering if I have it.
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sutherngrl
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Seek, I totally get what you mean about the "guessing" driving you insane. I have the same feeling about it all. It drives me nuts not to have validation.
I don't want to think that I am ingesting tons of chemicals into my body for possibly an illness that I don't even have. Yet at the same time, I would do almost anything to get well.
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Lymeorsomething
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True. It's just one big crapshoot. It's almost better to try everything and hope something works...
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seekhelp
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The thing is I'd go through a biopsy or anything to confirm an organism's existence rather than spending thousands or tens of thousands to treat the wrong thing.
LLMDs can take the approach these are sick, desperate people with nowhere to turn so they'll treat for anything and let's not prove it. The docs of last resort really. No matter how much everyone loves their LLMDs, unless specifically asked to not incur testing costs by a patient, how do you justify this?
At some point, one must make a decision that no organism is stealth enough to never, ever be detected via blood, smear, antibody testing, PCR, etc. I am stumped why LLMDs don't do routine smears to catch stuff. i realize Ab tests are specific for strains and some may not be identifiable. I strongly feel the lack of effort to do smears specific to these organisms is an error and maybe done to retain more client business from sick patients.
Some don't even care if money is an issue for a patient - they just refuse to do it to 'save the poor sick person's pocketbook.' Hmmmmm.. Timaca always says treat the obvious. I agree. Not looking at people's blood to me is the biggest crime overall in medicine right now. It's not explainable by any logic.
If it's in the tissues, order a biopsy IF the patient would do it. Hell, treatment is so costly and paid out-of-pocket. Patients need to demand more of their docs as to proof what they are treating is correct. Even if it's unidentifed organism, wouldn't it show up SOMEWHERE / SOMETIME?
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CherylSue
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Antarctica is the South Pole!
Someone mentioned rice crispies neck. I had that, too, in the beginning of my acute illness and relapses. I even had achiness in the back of my neck. Lyme or Babesia? Both?
I had relapsing/remitting CFS, which was eventually diagnosed as Lyme. I still think I may have babesia, too, although I don't get the headaches. But my initial illness was sudden with high fever and drenching sweats, and I mean drenching. I've never been so sick and weak in my life. The illness fried my brain, too, for months. The fatigue was incredible. I was bedridden for months that stretched out to a few years.
There's currently no cure for CFS. BUT there is treatment for Lyme. I saw a Lyme MD in Oct '07 and returned to work August '08. I just finished the school term and am out for summer break. Yeah!
I'm still fatigued, however, and often need two naps a day. I'm on low dose Flagyl now and working my way up. I think I may try the malerone (I do have some rx'ed from LLMD.) I still get mild night sweats (babesia?)
Also, a year ago a had a blood smear micropscopy from a local naturopath. She was kind of wacky, but I did see malformed blood cells, and stuff inside the cells that looked like it may be babesia. I discussed this with my LLMD, but he is cynical about blood micropscopy, and just believes in lab tests conducted by pathologists, Igenex or Genova Labs.
I've spend thousands of dollars on various treatments such as nexavir, Chinese Traditional Medicine, Nutramedix tinctures, some of Buhner's herbs, and every supplement from ProHealth.
I guess I've seen the most progress from my LLMD. Then again, it just may be the cycle from my illness. However, doxycycline has been able to bring me back quickly from minor relapses. I react positively to some of the meds.
If it walks like a duck, quacks like a duck, then it must be a duck.
In my experience, CherylSue
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Lymeorsomething
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I'm not sure there is always an obvious to treat. I wish we could all check ourselves into a diagnostic hospital and have Greg House mull our problems over 24/7 but it's not always that easy. I really do think that you have to throw some darts sometimes and hope something hits the mark.
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i have tested positive to babs and I have had severe neck pain for the last two years. Stiff, tight, knife in the neck type of pain. Usually on a scale of 8-10.
Once I got onto a full dose of Biaxin my neck pain has been reduced at the worst to a 2 only on some days. This is in less than 2.5 months of babs treatment.
FWIW, I also did accupuncture 3 times. Whether it was the abx or accupuncture to be the reason for feeling so good, I will never know and don't care!
Just as a precaution I am going to continue getting accupuncture every few weeks.
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Hoosiers51
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Member # 15759
posted
Yes, I did come out better off....can't remember if it was after the 10 days, or if it took more like 30 days. What got better was my brain and psych symptoms.
I think for me, I was treating bartonella henselae, which I've tested positive for through Quest (not the first time testing for it though). If the Lyme patient is dealing with bartonella henselae and not the mysterious "BLO"....I think you can assume it will take less time to treat than lyme, because it has a much shorter reproductive cycle than Lyme or babs.
So that is why I think the relief I felt after my 6 weeks on Zith/Plaq was Bart h. getting better. But, the neck pain could have been Lyme flaring.
Hope that makes some sense. In terms of testing, just keep testing. Provoke, then test. Use Quest for some of the things like viruses, etc or even for Lyme if you can't afford Igenex. This is assuming you have already tested once or twice through Igenex.
I think if it's there, and you test every 3-6 months, eventually it will show up. Whether it is when you're better (in the case of Lyme where sometimes you need to be healthier to show antibodies), or what...eventually I believe things will show up, because that has been my experience dealing with all this for 8 years.
I went to an LLMD that believed this, and he would test me all the time for things, and guess what? 2 years into treatment with him, I was positive for Bart. 3 years in, positive for babesia duncani when before we assumed it was microti. Luckily he didn't just diagnose me on the first day, then never test again, or I wouldn't have all the positives I have.
Posts: 4590 | From Midwest | Registered: Jun 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
My blood smear came back today from my local hospital. As usual, NO abnormalities found with respect to malaria, Babesia, or other suspicious organisms/parasites. This is insane my blood smear is clean as can be w/o all the LLMDs pronouncing co-infections....so hard to deal with.
Additionally, my free plasma Hg is now in normal range. ASO titer is coming down as well.
The only crazy off level was my B-12/folic acid. Normal B-12 is between 271-870. Mine was 1,648!! Normal folic acid is >5.4. Mine is >24.0!! Is this bad?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I have never had a babesia test turn positive but my toddler son did. Now we know I have it, as he has definitely not had his own tick experience. So there's the proof I need. I have never had classic babesia symptoms.
My new LLMD insists that we all have everything, and must so treat. I believe him. He said that babesia is a gatekeeper infection and must be treated.
Am starting aggressive babesia treatment this week, and am very hopeful and positive.
Posts: 3528 | From US | Registered: Apr 2007
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posted
I would not conclude based on the blood smear from a local hospital that you are free of malaria, Babesia or other. In addition to the proper technologies, the technicians need to be skilled and experienced.
According to Schaller in his Babesia book, even in Malaria-infested regions of Africa false negatives are common. While Santa's elves can build a nice jack in the box, I assume the little dudes could use some work on blood smears.
I returned negative on both Babs antibod labs from Quest, but the FISH returned positive for Microti. (Similarly, I returned negative for Bartonella antibod from Quest, but the Fry smear was positive for whatever it is called now.
I have mentioned it before, that I am "fortunate" to have a positive Babesia and Bartonella/Mycoplasma labs. But regardless of the lab findings, if I were you I would chose the same approach: attack them all. Attack them all for two or three or five years or until you feel like you should. Then attack a little more to be sure...
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
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