posted
I'm new to this site. I was recently diagnosed with Babesios (past infection) but have tested negative for Lyme (Igenex WB). I have neurological symptoms, muscle weakness, muscle spasms, fatigue. Does Babesios cause neurological symptoms or could I have an undiagnosed case of Lyme as well? I appreciate your insight.
Posts: 10 | From MA | Registered: Sep 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
If someone has Babesiosis there's a huge, huge chance the person has lyme with it. I read this in the Babesia book. If someone has Babs, you SHOULD suspect lyme. Just because your lyme test is negative, does not mean you don't have lyme. Did you have a Western Blot and did you have any bands at all show up? Or did all you have done was the Elisa?
Also, there could be a big chance you have other co-infections like Bartonella, too.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Personally, if you have one tick-borne disease, I don't think it's a giant leap to think that you may have more.
Who ordered your Igenex WB, and tested for babesiosis?
If you have a doctor who ordered those tests through Igenex, one would hope that your doc is capable of reading the results and giving you clear info. If not, find an LLMD because you don't have one.
When you say you tested negative through Igenex - was that a CDC negative (those criteria are for surveillance purposes, not for diagnostic purposes, per CDC)?
Maybe if you post your Igenex test results, you will get better help here. Post which bands were positive, if any.
Are you being treated for babesiosis? Or did your doc tell you it's a past infection and doesn't need treatment?
Just trying to better understand your situation.
Hope you find answers soon, and begin to feel better.
-------------------- �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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quote:Originally posted by CherylS: I'm new to this site. I was recently diagnosed with Babesios (past infection) but have tested negative for Lyme (Igenex WB). I have neurological symptoms, muscle weakness, muscle spasms, fatigue. Does Babesios cause neurological symptoms or could I have an undiagnosed case of Lyme as well? I appreciate your insight.
Hello and welcome Cheryls
I am in the same vote as you. I had a negative Igenex Lyme WB(but with several + and IND's on Lyme specific bands) And I just recently tested positive through Igenex for Babesia M. Based on this my LLMD does feel that I have Lyme but I cant help but wonder since I dont have all of the Lyme and Babesia symptoms and no muscle pain or arthritis. I have severe fatique, dizziness, musle aches and soreness and it gets worse when I exert myself. This sounds more like CFS and thats what I was Diagnosed with back in May Based on Symptoms and very high EBV titers). I really hope that I'm just reading too much into everything and that Lyme and Co is the cause.
The only thing that keeps me going is that there are little is any false positive Babesia test and the only way to contract it is through Blacklegged or Deer tick(same that also carry Lyme.
Goodluck to you, Mike
Posts: 103 | From New Jersey | Registered: Jun 2008
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Highly likely that you also have Lyme. Are you seeing an LLMD? Are you treating the Babesia now?
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
The following signs/symptoms may be present in those infected with Babesiosis: Fatigue Arthralgias Myalgia Drenching sweats Headaches Emotional lability Depression Dark urine Splenomegaly Dizziness Nausea and vomiting Cough Dyspnea Fever Chills Hepatosplenomegaly Jaundice Malaise Shortness of breath Bleeding tendencies, bruising Thrombocytopenia Hemoglobinuria Hyperesthesia Pulmonary edema Encephalopathy Low to normal range leukocyte counts Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
BRAIN: Encephalopathy may occur 1-6 weeks after the initial infection and is fairly common in patients with Bartonella. Note: Approximately 50 percent of patients who develop Encephalopathy can be affected by seizures (from focal to generalized, and from brief and self-limited to status epilepticus). Headaches, Cognitive Dysfunction, and CNS Lesions may be evident.
RASH AND LYMPHADENITIS: Erythematous papules (red splotches or slightly raised red spots) may develop. Such papules occasionally occur on the lower limbs but are more common on the upper limbs, the head, and neck. The papules may appear on the skin or mucous membranes. Bartonella may also cause subcutaneous nodules, with some bone involvement possible. The nodules may show some hyperpigmentation, be tender, fester, and/or be enlarged or swollen, but not always.
EYES: Conjunctivitis, Bartonella Neuroretinitis, Loss of Vision, Flame Shaped Hemorrhages, Branch Retinal Artery Occlusion with Vision Loss, Cotton Wool Exudates, Parinaud's Oculoglandular Syndrome, and Papilledema. BONES AND MUSCLES: Osteomyelitis, Myositis, Osteolytic Lesions (softening of bone), Myelitis, Radiculitis, Transverse Myelitis, Arthritis, Chronic Demyelinating Polyneuropathy.
HEART: Endocarditis, Cardiomegaly. Possible lab findings: The following may show up during standard testing: Thrombocytopenia, pancytopenia, anemia, elevated serum alkaline phosphatase level, elevated bilirubin, abnormal liver enzymes. X-ray of the bone may show areas of lysis or poorly-defined areas of cortical destruction with periosteal reaction. Cardiomegaly may show up on a chest X-Ray.
Biopsies of lymph nodes reveal pathology often indistinguishable from sarcoidosis. Reports of biopsies strongly suggestive of lymphoma do occur. Tests occasionally show an enlarged liver with multiple hypodense areas scattered throughout the parenchyma.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Hi, Cheryl.
Sorry to hear about your health. Here's hoping that you already have a good LLMD (?) but I am concerned that a doctor accepted a negative lyme WB if you have babesia. Most good doctors would look further.
As for if babesia can cause all the symptoms you have, perhaps. However, it's best for a full clinical evaluation by a LLMD who has seen hundreds - or thousands - of patients with the various combinations. They would need to see you in person and do a full history.
You may already be set with a doctor, and all the links you need.
If not, in the progression of link below, the first few links will explain the current medical/political situation and WHY a certain kind of doctor is needed - and WHY most doctors - and labs - are not adequate for chronic stealth infection diagnostics.
You have to know about the politics first so that you can then find the best help possible as quickly as possible.
Sadly, you have sort of entered a graduate level class. Be aware that most medical schools do not teach about tick-borne disease (TBD).
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
Everything You Need to Know About Lyme Disease and Other Tick-Borne Disorders, 2nd Edition - by Karen Vanderhoof-Forschner (2003)
You can search inside the book and read customer reviews.
--
[ 12. September 2008, 04:52 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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bettyg
Unregistered
posted
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying; so specific titles get our time/replies. non-specific ones, i sob, scroll on by!
Also, please be very specific in the subject line what you will be discussing so more people will be able to assist you.
Dr. Burrascano's most recent "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @ http://www.ilads.org/burrascano_0905.html suggests that you discuss with your doctor continuing treatment until you are symptom free for 2 months.
please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you! @ http://tinyurl.com/58eyou
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posted
Thanks for the comments. My Igenex WB had several + bands but IND on the Lyme specific bannds(just like Mike). My doctor has now ordered a Lyme Dot Blot Assay. She did mention that she would treat me for Lyme even if this test returns negative. She has mentioned the Marshall Protocol. Is anyone being treated using the Marshall Protocol? How is it going?
Posts: 10 | From MA | Registered: Sep 2008
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Alv
Unregistered
posted
My son had only band 30+ in IGENEX and BABESIA MICROTI positive from igenex.
YES he had Neyurolyme and BABESIA.They came together!!!
He was exstremely fatigue and had neurological ( severe headaches ) and actually had no muscle pain as I did .So yes it comes with lyme....so treat for it and you will see.
My daughter has fatigue and neurological problems.She has BART positive and band 39 only on IGENEX ( negative for the CDC) but she reacted on treatment right away .
BART also came with LYME in her case.Conformed by BIOFEEDback and confirmed with a 3rd person as ND with muscle testing.
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All my tests came back negative, completely zero on everything. My LLMD explained that the spiroketes disable the immune system, and after awhile the immune system doesn't even fight it.
The test is looking for evidence that your immune system is fighting the infection.
It's a clinical diagnosis in the end, and a good doctor will use history, symptoms, and tests. What convinced my doctor that I did have lyme was how I reacted to a course of doxycycline.
It was hoped that it would kill a few bugs, and the immune system would see it, and a 2nd test would be positive, but that didn't happen. I, however, had a herx that convinced my doctor that I did have lyme.
Later, I had symptoms of babesia, and the tests came back negative, but again, the symptoms and herxing on the med were convincing.
Posts: 563 | From New Mexico, USA | Registered: May 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Cheryl,
The Marshall protocol has helped some.
The Marshall Protocol (MP) has its own web site and you can do a search here for threads from the past. I don't recall seeing much in the past 6 months or longer.
Google search for a series of articles by J.D. (or J.C.) Waterhouse that were in The Townsend Letter sometime in 2006, I think.
She also has those at other sites.
I considered this a year or so back but was unsure about some of the aspects and about how to treat the coinfections.
In a nut shell, varying degrees of success.
You would have to have special Vitamin D tests done first. ONLY those who meet certain requirements around their levels of Vit. D. are allowed to even start the protocol.
You have to wear special sunglasses and cover up from all sun so, at least you'd be starting it at a good time of the year.
Herbal supplements and maybe even other nutritional support or vitamins must be avoided. Vitamin D, especially, is avoided on the MP, but you really have to study it before jumping to conclusions about that as, mentioned above, those who are on it are HIGH in vitamin D to begin with or they can't do it.
--
Another similar protocol but one that does not use Benicar or require avoidance of light or Vitamin D is THE ROAD BACK FOUNDATION.
You can google for their site. Again, I'm not sure if they address co-infections common with lyme or other tick-borne diseases (TBD).
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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As you mentioned your doctor is looking at MP, one alternate protocol (but one that uses strictly RX), here are a couple of protocols that look to herbals, but that at times are also combined with antibiotics (abx):
Lyme Disease and Modern Chinese Medicine - by Dr. QingCai Zhang, MD & Yale Zhang
you can access his web site through www.hepapro.com or try www.sinomedresearch.org and use "clinic" and then "clinic" for the passwords or call Hepapro.
========
poster's note: while few get well without attention to nutrition and supporting the liver and adrenals with specific supplements, anyone considering complementary approaches should be sure to have first read the abx protocol for a better grasp of the task at hand.
Excellent diagnostics by a seasoned LLMD would be of great benefit. From there, various avenues can be explored.
Basic, supportive herbs to "get the body stronger" are NEVER enough to get over lyme or coinfections. Very specific attention must be paid to the nature, life-span and forms of each tick-borne disease (TBD).
Each infection is treated differently and it is no minor undertaking. It is best to seek guidance with skilled professionals who are truly lyme and TBD literate. They will know, specifically, how to proceed.
Some naturopathic doctors (NDs) are also ILADS members and many LLMDs also incorporate complementary methods.
============
And, after all that, another curve.
You might want to check out this non-pharmaceutical treatment being done in Germany. A few people from here have gone over for treatment. According to reports, about 2,000 lyme patients have done well with it.
Thank you for the great information. My Vitamin D levels are high. My doctor talked about starting the Marshall Protocol for Lyme, and a treatment similiar to treating malaria for the Babesia. This is overwhelming! I will check out of those other treatments so that I can talk to my doctor about those as well. Thanks again.
Posts: 10 | From MA | Registered: Sep 2008
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posted
Wow.. a doctor that recommended the MP?! Every doc I ever mentioned it to just rolled his/her eyes and said it was a crock.
I was very close to going on it when I thought I had CFS previous to my Lyme diagnosis. In fact the doctor I went to to get on the MP is the one who started the Lyme ball rolling and got me tested.
I seriously considered it for Lyme, but decided to go the LLMD abx route instead. However, I would still consider it down the road if needed.
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