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» LymeNet Flash » Questions and Discussion » Medical Questions » Need advice, please

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Author Topic: Need advice, please
battlewithlyme
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Member # 5853

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I was diagnosed with a +wb in Nov. 2002 after many years of strange health problems. I am a 46 yr. old female and live in the south.

I started with headaches (sides & back of head), joint pain, fatigue, coughing, ringing in ears and hearing loss, tingling feelings in head, feet and hands and an undiagnosed problem with the optic nerve in one eye...doc keeps checking for glaucoma and I have some blurring of vision in that eye at times. I do recall my hairdresser noticing a very red place on the back of my neck at the hairline, but I never got it checked at the time.

I have been treated by an LLMD with some resolution of symptoms by taking oral antibiotics (zithromax and flagyl and diflucan) and a couple of times I've taken mepron and another time larium.

The symptoms that haven't resolved are tingling in hands, face and feet (that have spread to other areas of my body) and ringing in ears and occasional blurry vision. I just have been so thankful to be "functionable" again that I tend to overlook the things that haven't gone away.

I did pulse dosing one week per month from March til May and we decided that I was doing well enough to try a vacation from antibiotics. In the last week, though, I have had a return of fatigue, headache, sweating, feelings of anxiety, and overall malaise, with an increase in the vibrations in my head.

Does this sound like a relapse of lyme or babesia? I am putting in a call to my doctor (who was out of town the end of last week) to see what he says I should do. I have never taken any supplements or anything besides the antibiotics that my doctor prescribed.

My most recent blood work was good except that my level of immflamation was high.

I will be very apprecciative of any advice.

[This message has been edited by battlewithlyme (edited 28 June 2004).]


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riversinger
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With high levels of inflammation and the symptoms you are recounting, I would wonder whether the Lyme was ever actually under control. I would definitely contact your doctor to discuss the need for continuing treatment.

As far as to whether is is Lyme or Babesia, I have no way to know. As Cave said, tests aren't very useful for deciding if there has been sufficient treatment, so you have to go more by symptoms and response to treatment.

If you have been ill for a long time, your treatment period was fairly short, and sounds like it was not varied much. Sometimes different antibiotics will get at different symptoms, so you may need to try something other than Zith and Flagyl.

Sorry to see you dealing with this, but glad you have found this board. Welcome!


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Beverly
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Hi battle,

I'm so sorry you are not doing well right now. I also do not know if it is Lyme, Babs or a re-infection.

You said,
"I have had a return of fatigue, headache, sweating, feelings of anxiety, and overall malaise, with an increase in the vibrations in my head.

Does this sound like a relapse of lyme or babesia?"

My guess would be Babesia but that is just a guess I am not a doctor, just a lyme patient.

I have Babesia and my feelings of anxiety are directly related to Babesia for me, the first med to ever touch this symptom is Plaquenil.

Babesia can be hard to get rid of and many people have to be re-treated.

Here is some information previouilsy posted by Tincup, hope it helps.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Dual Infection Worsens Lyme Disease Symptoms

People with concurrent Lyme disease and babesiosis suffer a greater number of
symptoms and a longer duration of illness than patients with either infection alone,
concludes a June report in the Journal of the American Medical Association co-authored
by several NIAID grantees.

Coinfection with both tick-borne pathogens occurs in about 10 percent of patients in
certain areas of southern New England. In these and other areas where both infections
exist, the authors write, "the possibility of concomitant babesial infection should be
considered when moderate to severe Lyme disease has been diagnosed."
1. The prospective, longitudinal study included all cases of Lyme disease and babesiosis
identified during May through September from 1990-1994 in an island community in
Rhode Island and during 1992-94 in two Connecticut medical clinics.

Of 240 patients diagnosed with Lyme disease, 26 (11 percent) were coinfected with
babesiosis. Coinfected patients more frequently experienced fatigue, headache, sweats, chills, anorexia, emotional instability, nausea, conjunctivitis, and an enlarged spleen than
those with Lyme disease alone. Exactly half of the coinfected patients had at least one
symptom, primarily fatigue, that lasted for 3 months or longer compared with just 4
percent of the 184 patients afflicted with Lyme disease only. The ten patients diagnosed
with only babesiosis also had fewer symptoms and a shorter course of illness than did
patients coinfected with Lyme disease.

Babesial parasites invade red blood cells and cause a malaria-like illness characterized by
fever, chills, drenching sweats, muscle pains, headaches, and malaise. In contrast, the
Lyme disease spirochete homes to various tissues and causes a flu-like illness, rash,
arthritis, and less often, inflammation of the heart and nerve disorders.

The life cycles of both pathogens depend on the same reservoir host, the white-footed
mouse, and the same transmission vector, deer ticks. Thus, the possibility of coinfection
is of potential importance, the report cautions, to the many people who live or vacation in
sites in the northeastern and Great Lakes regions of the United States where these
infections are emerging. "Physicians caring for patients with moderate to severe
Lyme disease," they write, "should consider obtaining diagnostic tests for babesiosis
and possibly other tick-borne pathogens in regions where these diseases are
zoonotic...."

NIAID grantees David Persing, M.D., Ph.D., of the Mayo Clinic in Rochester, Minn., and
Sam R. Telford III, Sc.D., and Andrew Spielman, Sc.D., both of Harvard University in
Boston, contributed to this study. A second study led by Drs. Telford and Persing raises
the possibility of coinfection with still a third pathogen. This study found that the deer
tick also is the primary American vector of human granulocytic ehrlichiosis (HGE), an
infection first identified in people just two years ago. In addition, the white-footed mouse
is the main reservoir of HGE infection.
******************************************
These are some of my notes from things I studied...
Babesiosis symptoms include: 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% of Babesia
patients are known to be co-infected with Lyme disease. "As with malaria, these
symptoms can continue over a protracted period or abate, then recur." A chronic
infection would normally show a low titer (IgG). An acute or current infection may show
a high reading on the IgM test results.
Quinine Sulfate is contraindicated in persons with optic neuritis, which is one of the
problems many Lyme patients have developed.
This medication lists precautions for
those with Vitamin K deficiencies and clotting disorders which are often found in
patients with Lyme disease. "Seven days of treatment with Quinine" has been proven to
"be ineffective in cases that are chronic".
Mepron/Biaxin combo or Mepron/Zithromax
are the preferred methods of treatment. It may take a year or more of these
combinations. It is recommended that patients who take Mepron for Babesiosis should
eat fatty foods to aid in the absorption process. Ginger is found to be helpful to ease
nausea in some patients.

There are a number of references warning of false negatives for the Babesia tests, but no
references for false positives tests. (Smears, antibodies, PCR, and FISH)
Toxic overloads (HERXHEIMER REACTION) are seen in many cases after medication
for Babesiosis is given, generally appearing first on the third to fifth day, and then about
every three to five weeks, thereafter.

"Although high titers (even at 1:4096) have been detected in patients in the acute phase, a
cut off point of 1:64 is generally accepted as diagnostic in IFA testing." The literature
states that a "Titer of 1:64 (is) indicating a chronic or subclinical infection."
"Co-infection increases the severity of the disease, therefore, it is important to diagnose
and treat both infections." Complications include "relapses". It is recommended to treat
Babesiosis before Lyme Disease in order to increase the effectiveness of Lyme
treatments.
The highest risks for death: "The elderly, immunosuppressed patients, and
splenectomized patients are the typical populations at risk for severe infection.
Patients who are co-infected with Lyme disease have a higher risk of life-threatening illness
than with either disease alone.

Of the ticks collected (in the NE US) and sent to the IgeneX Lab by Dr. Richard Ostfeld
at the Institute of Ecosystems Studies, 43.3 % of the ticks were infected with
Babesia microti (November 1998). Serum samples sent to IgeneX Lab in California, by
Dr. Richard Horowitz in 1998, reveled 66% tested positive by RNA and/or PCR.

Medical/legal pitfalls-"Failure to initiate immediate therapy in high risk individuals".
------------------



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Beverly
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PS,

Welcome to LymeNet and I agree with the above posters.

Keep us psoted.


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battlewithlyme
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Thanks Cave, Riversinger and Beverly for taking time to reply to my post...I appreciate your comments. I'm looking forward to learning more about lyme here on this board.
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breathwork
Frequent Contributor (1K+ posts)
Member # 567

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Hi Battle...

I'm an almost 46 year old woman from the South as well....but I now live in CA.

I agree with the ideas posted above. These symptoms could be babesia or they could be neuro lyme symptoms, or both.

I saw my LLMD doc today and have been treating my babesia nad lyme for years. He said that he believes that there are many strains of babesia that are not microti or WA1, and some are tougher to get rid of than others. Mine is one of the tougher strains, oh joy.

You are not alone in this and are in good company on this board. Definitely contact your doctor ASAP and know that diagnosis of lyme is never to be based on labwork. It is a clinical diagnosis. Positive blood work is nice to have, but the clinical picture of the patient is the basis on which to determine treatment...

Hang in here!
Carol Ann


Posts: 1062 | From CA USA | Registered: Jan 2001  |  IP: Logged | Report this post to a Moderator
   

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