posted
I'd like to hear your experiences / opinions. I have been on mepron 2.5 tsp 2xday, biaxin 1000 mg 2xday, ceftin 500 mg 2xday for three months. I have had two periods of a few weeks each when I feel improved. And then, crash. I wake up nauseous, shaking, and sweating. And I'm down for a couple of weeks. I can't tell what is babs, what is GI trouble from the tx itself, and what is still leftover lyme.
I am so discouraged. Having these setbacks is depressing.
I have read theories that babs and lyme have a symbiotic relationship .. and also Dr. B's guidelines suggesting at least four months, +2 months symptom free. But that's just it -- what are babs symptoms and what are lyme?
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
quote:Originally posted by JeffM: I'd like to hear your experiences / opinions. I have been on mepron 2.5 tsp 2xday, biaxin 1000 mg 2xday, ceftin 500 mg 2xday for three months. I have had two periods of a few weeks each when I feel improved. And then, crash. I wake up nauseous, shaking, and sweating. And I'm down for a couple of weeks. I can't tell what is babs, what is GI trouble from the tx itself, and what is still leftover lyme.
I am so discouraged. Having these setbacks is depressing.
I have read theories that babs and lyme have a symbiotic relationship .. and also Dr. B's guidelines suggesting at least four months, +2 months symptom free. But that's just it -- what are babs symptoms and what are lyme?
Jeff, are you taking artemisinin as well ? It's a strong recommend from lyme doc's.
Biaxin and ceftin would treat the lyme as well as babs. Are you pulsing the mepron ? If not you may need to detox.
Lyme/babs can have very similar symtoms. However, babs is often accompanied by sweats/chills, chest pain, labored breathing, heart palps, migraines. You mentioned you still have sweats. Did you have these other symptoms and are they now cleared ? Our doc treated my son until these main symptoms ceased and then another 6 weeks for good measure.
Now, he said you'll still have lyme symtpoms and he goes back to treating those. However, he added flagyl to his abx after babs treatment to clear any remaining babs that may be hanging around. My son never presented babs symptoms again.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Even an experienced Dr has a hard time to figure out if the symptoms are babesia related. Here is a hint that is useful.
If the symtoms occur on a regular basis but go away, the Babesia is under control. If they are there all the time then is it NOT under control.
So here are some questions that I have asked... along with some answers...
If is under control, does that mean it is gone? NO
How do you tell if babs is gone? The ony way is to stop the medication and see what happens.
In addition ther is an odd effect that i have noticed and confirmed....
On Lyme flare up, it is pretty clear that the immune system is compromised temporarily. I say this as I have some long standing, encapsulated infections (anal fistual to be exact) which is dormant during the times between lyme flare up. It becomes grossly infected immediately after the flare up of LYME symptoms, (joint inflamation in partcular.) As noted this pattern is predictable AND 100% repeatable. My co-infection symptoms follow a similar pattern of intensification immediately after the Lyme flare up.
So what does this mean to co -infected people? If this observation can be extrapolated to other patients it would mean that any infection that may be asymtomatic can become symtomatic as a result of a lyme flare up cycle and coresponding reduction in immune competance.
So, if this occurs, then babesia, bartonella or any other hard to eliminate disease is still lurking in a asymtomatic state it might very well wake upin a cyclical fashion.
Does that mean that you still need treatment? It is hard to say, maybe yes maybe no. Again the only way to see is to stop the particular drug for that infection.
I have been dealing with this problem for quite some time now and the above the are conclusions I have comeup with. For me stopping the drugs has resulted in relapse. Hopefully with the new combination that I am on now is more effective at addressing the problem.
What ever you do, if you stop, WATCH FOR RELAPSE and have it delt with promptly. It is VERY hard to get out the hole after a relapse.
Hope that makes some sense.... I feel like crap and my IV is done so I am going to bed.
Posts: 1184 | From north america | Registered: Feb 2003
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi Jeff,
It took me two years of treating Babesia before my symptoms let up some. I never had major sweats, but I did have some. I guess the symptoms that improved for me I associated with Babesia, but it can be really hard to tell what is lyme and what excatly is Babs.
Here is some information on Babesia by Tincup, maybe that would help some?
Tincup
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.
Hang in there, don't loose hope it gets better.
Posts: 6638 | From Michigan | Registered: Jun 2001
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quote:Originally posted by JeffM: I have had two periods of a few weeks each when I feel improved. And then, crash. I wake up nauseous, shaking, and sweating. And I'm down for a couple of weeks.
Could be a herx.
---------------------------
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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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Although my tests are neg for babs, I am diagnosed with it and am sure I have it. Mepron/biaxin/ceftin cleared my brain fog, memory, and allowed 60% functioning after the first few hours of the day, which are a b**ch.
Yes, I forgot to say I take artimisin as well.
The only symptom that seems left, and is not constant, is the sweats and, in the morning, waking up like my body is vibrating. I really belive this is someways related to toxins laying there all night in the GI tract -- until I eliminate them, I have debilitating symptoms. Last week I had a colonic, the first in a month, and I am so much worse after them, they are painful and debilitating themselves -- I think they stir things up, toxins are elimiated by also reabsorbed, and bam I am sicker.
But I also wonder if the mepron is just too too hard on my GI tract.
I want to take a break from it and will talk about it with my LLMD.
Thank you all again. I feel so hopeless. I truly believe these two diseases are going to kill me. The path to wellness with these diseases, which are severe and longstanding for me, is miserable suffering. I know I am preaching to the choir. My family and friends are appalled at how sick I am and so am I. Even after a year and a half of aggressive treatment and some areas of significant progress.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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suki444
Unregistered
posted
Hi there
Don't lose hope - Babs is tough and repeated courses are often necessary. I agree even with an experienced LLMD it is difficult to tell what are Babs symptoms and what aren't!
Nightsweats, nausea/gut pain, palpitations, difficulty breathing, headaches can all be Babesia...but if it is just one or two symptoms it can be hard to tell.
You can always get retested a few months after Babs meds although this isn't 'guaranteed' to show it if it is still there.
Just monitor your symptoms, see what is getting worse and which symptoms respond to Lyme meds...those that do not are probably co-infection.
I get the vibration on waking sometimes too- don't know what that is!
Dr b does treat for five months + until symptoms are improved as it can take that long to get the babs. I always wondered if it had to do with the lifespan of a RBC maybe. He does add artemesia or artemesinin to stop resistance also.
Weeks after Babs treatment Questran can help neurotoxins from the Lyme itself too, sometimes a course of this can be useful.
Make sure you take Mag Tabs and COq10 (only when not on Babs treatment) to replace what is being lost. Shakiness can be a magnesium deficiency,
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Jeff, you could try replacing the mep with malarone. Many here have had great success with it. Plaquenil is another option. I'd continue the art with both. You may want to try pulsing these meds. 3 weeks on and one week off to allow detox. Adding chlorella and lot's of water on your week off will help detox.
If occasional sweats are the last main babs symptoms you may want to push on through the babs treatment for a little while. Getting rid of the babs would be a huge boost. The biaxin and ceftin are treating the lyme anyhow, so there's no danger you'll relapse.
Mep can be hard on the GI. My son had to switch the mep to plaquenil. It worked for him.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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JimBoB
Unregistered
posted
Red Root tincture is SUPER important IF you are going to keep your dieoff to a GOOD manageable level. THEN you won't have to worry as much about detoxing; IF you don't overdue it with abx or strong herbs.
I would NOT take Artemisinin for one minute without the Red Root. In MY estimation, Red Root is more important than the Artemisinin, IF you want to really get healthy and NOT overtax your liver, spleen, lymph nodes, throat, tonsils, etc..
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
HI JeffM "How do you tell when babs has been sucessfully treated?" Untill your babs symptoms go away and stay away.
I would definetely ask my LLMD about adding some artemisinin. It wasn't untill I added the artemisinin to the "brew" you are taking that I finally kicked most of my babs symptoms.
Good luck with your fight and hope you can feel better soon. Bab's a tough one to crack but isn't impossible. I don't have fever or chills now-first time in 20 years!
My situation is similar to yours. I just started my 4th month of mep/zith/art. I thought by this time I would've seen more progress but it's more the same. I'm learning that babs treatment takes a long time especially if you had it for a while. Like you I'm constantly wondering and researching this bug and trying to figure out if my treatment is working. Keep in mind that red blood cells have a life span of 12 weeks...I'm hoping to see some improvement in the coming months as my body expel remnants of this die off. But of course I have my doubts after reading about those requiring years to feel better. Oh...I also get the vibrations upon wakening. My feeling on this is when we sleep, our body is in a total relaxed state and thus more vulnerable to toxins effecting the nerves that control motion....just a thought. I had read somewhere that babs tend to migrate toward the spinal column.
Best Wishes!
Posts: 187 | From Gaithersburg, Maryland | Registered: Feb 2006
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posted
Jeff, I don't know that much myself. This is all new territory to me...I have no idea if and when things will turn for the better. I think all the unknowns of this disease is what drives me crazy sometimes. Wouldn't you agree that if we knew for sure that we would get better by a certain time then all the suffering is so much more bearable. I get sweats mostly at night. However, I don't get the alternating cold/hot feelings.
Posts: 187 | From Gaithersburg, Maryland | Registered: Feb 2006
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liz28
Unregistered
posted
I've been symptom-free over a month after having a babesia-like illness for six years. I used a combination of chloroquine and primaquine. I took three 3-day courses of chloroquine over a 3-week period, and pulsed primaquine for three months.
I was on mepron over a year, and it only held the babesia in check, without ever curing it.
My personal opinion is that babesia is not like Lyme disease, a slow-growing organism that takes months to kill off. Instead, it seemed more like plasmodium vivax, or relapsing malaria. Malaria is treated with combinations of drugs that clear the active form of the organism from your bloodstream quickly, and a dormant form hidden in the liver over a period of weeks or months, depending on how well you tolerate the "cyst buster" malaria drug, primaquine.
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posted
when you get the sweats are you in deep sleep and are you freezing at the same time or hot when you are sweating? i am very cold when i get the sweats and only get them in sleep, radha
Posts: 392 | From New York | Registered: Dec 2005
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