posted
ok ive been taking abx for a long time now almost a year or so and have been on many different abx but not all. Currently im on a protocol which consists of
2 shots 1.4mil units each of biciln every 5 days flagyl 500mg 2x a day artemesinin 100mg 3xday cats claw not sure mg but 3x day and alphalipoic acid 3x day
my doc, doc E in jackson told me to hold this proctocol for a month and at my last visit took coinfection tests. The coinfection tests came back negative for all but the cb-57 came back in low end of the normal range.
My problem is that now after 5 days is up without the bicillin shots i relapse almost within a day or 2 and feel miserable until i get the shots again. The flagyl is helping but it causes me to be depressed and i realize that when i dont take it for a few days because i feel alittle worse but the depression just majically lifts away. I think i might despite negative test results have bartonella bc the abx for it are the only ones i havent yet tried so i dont know what to do. i recall reading somewhere that if u relapse after a few days of bicillin class medication that u probably have coinfections im lost i hate this thing its wrecking havoc on my life my main symptoms are stilll -nuerological and -extreme fatigue -and i also still see many visual stars shootting around but i havent been paying much attention to them lately does anyone have any knowledgeable information for me because i feel like im sufering in hell while the majority of the population is in heaven !
Posts: 41 | From new jersey | Registered: Apr 2006
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posted
im just going to sit here and wait for a response because i know you guys always check in and are fast to help people plus i feel like crap im sikk today stuffy soar throat soo i have nothing better to do then sit by the computer
Posts: 41 | From new jersey | Registered: Apr 2006
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi cantpredictme,
Many people who don't get better after abx for lyme, do indeed have co-infections. Co-infections complicate things.
I was treated for lyme for 2 years and made progress but not enough. I finally made a lot of progress after being treated for Babesia.
Here is a symptom list for Bartonella, this was posted previoulsy by Liz28..thanks Liz.
Bartonella:
"I had bart for years, and started getting better immediately with rifampin + ketek treatment. If there is any chance at all you have it, you have to treat for it. The symptoms can be interchangeable with Lyme, and even worse, they can be partially suppressed by Lyme drugs.
Without any treatment, bart begins as a relapsing fever that has neurological side effects:
As it progresses, you get splitting headaches, swollen lymph nodes, sore throats, shin splints, body aches, severe neurological disturbances, severe ADD, insomnia, extreme fatigue, scratchy eyes, thyroid problems, blood seeping continuously from your nose, and eventually psychosis. Yes, you read that right.
I've been thinking about a PICC line as a last resort for the most hard to reach Lyme. With bartonella treatment, however, I went from being almost completely disabled by relapsing fever and fatigue to 90% remission in a couple of months. I still have mild symptoms of everything, but at least I can hold down a job and exercise again. Although I always had one personality while I was sick, I had lousy impulse control and would get angry over nothing. The final destination would not have been pleasant. "
Posts: 6638 | From Michigan | Registered: Jun 2001
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posted
hey guys thanx for the responses those symptoms for bartonella mimic mine almost its kinda creepy how much related those symptoms are to me i jus dont understand why the coinfection test did not pick any of them up another major concern is that flagyl really does help me feel more like myself and i love it but hate the depression sideeffects its not even depression its a spacy feeling with much emptiness no crying at alll though i feel as if i cant cry well i dont have much to cry about and no i havent been on mepron i will discuss all of this wit my doc i have my second appointment with her on wenesday so hopefully she willl see this and hit the spot with the right meds for me thanks again!!
Posts: 41 | From new jersey | Registered: Apr 2006
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
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.
Hang in there and I hope some of this stuff I posted helps you and I sure hope you start feeling better soon. These diseases really stink.
Posts: 6638 | From Michigan | Registered: Jun 2001
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posted
thanx alot beverley i really apprecaite u going out of your way to share this information with me i will print some of this out and bring it to my next appointment wednesday thanks again garry
Posts: 41 | From new jersey | Registered: Apr 2006
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I finally tested positive for Babs after 4 mos of Lyme tx. I never tested positive for Bart but self-dx-ed due to sx (esp sore soles of feet). I herxed more than I ever have ever on Levaqin and managed (with the help of an LLMD psychiatrist) to stay on it for 17 weeks.
My LLMD said that Bart can exist inside cells so the body doesn't "see" it and therefore doesn't make antibodies to it and the antibodies are what the tests looks for. That's one reason why I might have tested negative. The same LLMD said that my rxn to Levaquin was such that any patient (Lyme or not) the doc put on Levaquin who had that rxn, the doc would suspect TBD.
Another reason tests come out negative is because the immune system can be so wiped out battling these infections that it no longer makes enuf antibodies to register on the tests.
I am so glad I did my research and got the support of my docs to tx for Bart. Good luck! Denise
Posts: 261 | From San Mateo, CA | Registered: May 2005
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Hi,
I find that Tindimax is less depressing than Flagyl. Also, it is getting easier to take it as my germ load goes down.
posted
I think I have bartonella, too - isn't metronidazole used to treat that? I know metronidazole was one of the meds in the past that had helped me.
Like you, while on IV Rocephin I was relapsing every day I didn't infuse - so I recently went on oral Ceftin. But still, I find I'm not improving - maybe even worse than ever.
On my worst days, I find that I don't feel better until I CRY (or sleep - which is a joke as I'm going to bed at sunrise lately).
What's worse is it's almost like my brain won't let me cry until I get angry first. Does that make sense to anyone? After I cry, I feel better for a short period of time until it flares again - usually within a half hour.
I'm just upset that doctors don't attempt to treat coinfections even when tests are negative with how unreliable the tests are.
How often should one get retested for coinfections? I've been tested twice, but I'm going to ask again.
I think I have babs, too, because wormwood is the only thing that helped that. My doctor is too conservative.
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posted
I think bart is bothering you.....it happened to me..even thought I was on a very good treatment for lyme and babs for "years" I was getting worse neuro symptoms..I was negative twice for coinfections.....but bart treatment made me feel almost 100%....my problem is babesia....
Posts: 983 | From The sky | Registered: Feb 2005
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