posted
From what I understand co-infections are just as hard to detect as lyme and that they, also are a "clinical dianosis". My test for babesia bartonella, & ehrlichia came out negative.
I mentioned the "clinical diagnosis" to my dr. He said "treatments are very similiar and it's hard to differentiate lyme from co-infections". I have read posts,... leading me to believe that it is just the opposite.
So my question is how to tell which co-infection you have? Does the dr. go by your symptoms? So do the symptoms in these 3 co-infections vary? Could someone please let me know anything. Any advice is greatly appreciated.
Seems as though sometimes we have to be our own drs. and let our dr. know how to treat us. **sighs** Suexi
Posts: 30 | From LV, so. calie | Registered: Dec 2006
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posted
That's why we all have LLMD's....Lyme Literate MD's.
I only have a minute.....be back later!
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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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posted
Some drs will do a trial run of meds for each coinfection. The meds for babesia are VERY different from those for Lyme. The meds for Bartonella are different also.
What your dr was probably referring to is that the treatment for Ehrlichiosis is similar to the treatment for Lyme.
You CAN get tested through Igenex Lab for these coinfections.....or ask your LLMD to treat each one.
Treatment from a GP is not the way to go. Don't learn the hard way.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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posted
Thank you very much!!! im in calie and its hard to find a good LLMD. I went to one and did not care for him.
I don't have rides to go very far so i go to an ND in Pasadena,calie. Not too far from me. he used to work in CT so i thought he was good.
But now im beginning to wonder because of what he said about the "co-infections".
Im sorry that i don't have a good LLMD so i NEED all the help you people can give me.
Thank you again Suexi
Posts: 30 | From LV, so. calie | Registered: Dec 2006
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I would say from experience to treat coinfections even if you dont have the symptoms they say in the books.
WHY? because I was sick from light because of babesia, and NO where have I read that babesia makes you sick from light, and I also was sick from the computer and TV and EMF because of babesia.
I then had to treat lyme.
I would treat all coinfections, the bartonella, the babesia and the erlichia, regardless of the tests.
I would never have thought that BABESIA was making me sick from light.
Babesia was just as bad as lyme, it was killing me.
Treat the coinfections, regardless of the tests, to put the mind to rest.
I found after treating babesia, the lyme herxing was MUCH worse and I had to lower dosage of antibiotics, the babesia hides the lyme I was told,
and this was correct for myself.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Just a word of caution,
There is consdierable overlap between co-infection symptoms and Lyme symtoms... I know this first hand as I have lyme + 3 co's.
One way to tell is if you don't get better with lyme treatment alone. I believe that this is used as a universal indicator that you likley have co-infections.
A few well known observations are as follows:
If there is severe neurological symptoms and minimal classic lyme symptoms then babesia is often found.
If the symptoms are present all the time without any flucutation, particualarly after treatment has started, co-infection is highly likely
Severe sweating, any time during the day (ie random times of day and month)... possibly lyme but better look real close for babesia
Stomach problems... check for bartonella
Sore feet in AM... check for bartonella
"odd stratch marks.... Bartonella
If you stop treatment and symptoms come back quickly (ie days or a couple of weeks..) Co-infection is the cause. Due to the slow growth of lyme it should take a long time to come back (1month to 2 month time frame at least if prior treatment was effective.)
Babesia has been associated with severe neurological symptoms.
In general, most of the co-infections are responsive to pretty well all the antibiotics used for Lyme. This is not to say that they will erradicate the co-infection, instead on first treatment, they will knock it down a certain degree. One difference is babesia. It will not respond significantly to antibiotics alone and an anti protozoal is needed. If you do not have a supportive babesia antibody titer or visible paracitemia then the Dr may treat based on clinical signs, but generally not until the bacterial infections have been addressed.
The above is a summary fo various discussions and presentations with Ilads members.
On a more personal note, I have seen that babesia relapse is fairly obvious. Dark Urine and out of breath on mild exersion as well as out of breath while sitting are common signs.
Another indicator that I have seen is non cyclical fatigue. Lyme produces waves of overwhelming fatigue in the early after noon. Babesia just makes you feel like $h1T all the time.
As far as bartonella goes, this was related to a severe morning nausea and sore feet in the first hour after waking up. Bothe clear up by noon but are very severe in rising.
Another one that I don't know much about but I do know that when specifically treated made a tremendous improvement is mycoplasma fermentans. I am not sure of the significnace but a 3 anitbiotic mix is used to treat it and when it was treated successfully, there where major objective improvements. Up to that point all I could do is reach a plateau that could only be maintained with intesive treatment.
As stated, I do not know the significance of MF, it is quoted by some as the casue of gulf war syndrome but nothing is proven as of yet.
In any case that is a quick review of co-infection and their identification. There are a lot of potential co-infections, both viruses (which I have not mentioned at all,) as well as bacteria. The above are the ones you hear about most on lymenet and the various chat groups but there are at least 2 dozen other possible co-infections that are known to be in the murine (ie mouse) resorvoir, particuallry if you got infected in europe. Unfortunately virtually none of these have any decent tests, at least for humans. This lack of decent test availability also applies to the "common" co-infecions like babesia and bartonella, both which suffer from an inability to detect anitbodies due to strain diversity.
Another thing to remember is that a person can act as host to a number of infections. The infections compete for resources and some may flourish while the others are forced to a dormant state. When this happens, treating the dominant infection allows the dormant ones to flourish. Unfortunately, many of the symtoms overlap but there can be subtle differences. It is therefore important to record the changes in symptoms that occur so that their cause can be extrapolated from the particulr treatment being carried out.
From your brief description it sounds like your Dr is on track. Co-infection is very difficult to diagnose and treat and NO Dr can zero in on a mix, on one or two visits, even with a comprehensive history. Also keep in mind that every drug added to a treatment regime increases the risk of liver or kidney problems.
*IT IS IMPORTANT TO REALIZE THE FOLLOWING*
Some thing that is not often quoted but is a fact of life is that the liver has to metabolize all this stuff and no one knows the long term effect of these drugs... things like cirrosis or liver cancer after many years is clearly possible based on observations relating to chemical exposure and alchohol abuse in the general population. As a result caution is warranted, and from what I can see, exercised by most Dr's, even the very "agressive" ones. In my case I will take the chance given the other option of further neurological decline. Aggressive treatment has returned my to a functional state and for that I am grateful, regardless of the risks.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
Thank you all SOO Much... It's amazing what i have learned on here. I'm also doing more research about co-infections on the internet. When i was first diagnosed with lyme,(did it on my own w/the igenex kit) I just DIDN'T Realize the IMPORTANCE of including the co-infections. All i could think about was killing the lyme,itself.
When asking my dr., he didn't seem to put much emphasis on co-infections either. I know now i definitely need a good LLMD which I have found.
The first visit will take 8 driving hours to get there!!!! But it will be worth it! Thanks everybody and hope you having a good day!
Suexi
Posts: 30 | From LV, so. calie | Registered: Dec 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi suexi
As with lyme the symptoms for co-infections seem to vary alot from person to person.
For me here are the following that I can absolutely contribute to co-infections:
Babs...I tested positive to babs but never got the classic night sweats or air hunger. But when I started treatment for babs, I was sweating gallons while I was herxing.
Fever & chills turned out for me to be babs related. After my second go round on babs meds I finally got rid of the fevers and chills I have had for the last 20 years.
I also have stomach problems which I believe are babs related. I wasn't able to continue long enough on my last babs treatment so I had to stop to early. My stomach would no longer hold down the meds. I wish I could have gone a bit longer.
My mind fog did improve slightly after treatment. So I think part of my nuero problems where babs as well as lyme related.
For me also weight loss & the ability to not be able to gain weight is a babs symptom. It was one of my first signs something was wrong 4/5 years ago. No matter how much I ate, I could not gain weight & was lossing at an alarming rate.
This is also a symptom that varies alot from person to person. Some people have stated that they gained weight because of lyme & babs.
Bart...Definetly foot pain is related to bart. Not on meds right now, but when I rife bart frequencys my foot pain gets worse while I am herxing.
My occational emotional melt downs I think some of these are bart related. Although lyme can do a number on neuro-related problems. I don't get the "bart rages, just what I would call "melt downs"
It is really hard to tell at times because co-infection & lyme symptoms do over lap. I didn't know for sure untill I got treated for some of the co-infections & then herxed so hard, it is a good indicator for me of where my problems steamed from.
Lyme & the co-infections are all very complicated disease's to treat. You positively need a good LLMD to get anywhere with treatment. The GP & most of the non lyme literate specialists do not have the lastest knowledge & experiences to do battle with this "soup" that makes up lyme.
Good luck to you Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
Trish, ME TOO I was sick from light (light sensitivity) because of babesia TWO TIMES, so I'm SURE IT WAS babesia causing me this specific symtpom!
Once babesia was knocked down, so was the light sensitivity.
Yes yes, again, when a co-infection dies, another thing takes place and new symptoms flare. First time was borrelia after knocking babesia, then after knocking a bit more of borrelia, bartonella came up more than a year after bite, without any symptom! I got my first bart rash then!
Now I knocked (I think) mycoplasma and bartonella from recent re-infection, and am on fierce fight against this second time re-infection with babesia.
Today, I think babesia is weak, but then, borrelia came up: EM RASH appeared for the first time (I mean, I got EM rash by tick bite and nevermore). Soooo strange. It's a ballet of infections....
Other symptoms of my 2 babesial infections: - strong brain fog, - light sensitivity, - extreme fatigue, - mood swings, - chills and variations of body temperature during the day, - severe herxing (in the lungs too), - thyroid stress (difficulty to transform T3 in T4) - lack of ferritin or iron
These are symptoms I tracked from my 2 babesial infections, exactly the same!
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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bettyg
Unregistered
posted
here's another good, reasonable $$ lab to test co-infections!
ARIZONA LYME/TICK LAB ... excellent for co-infections: bart/babs!
Scott Forsgren or someone stated cost was $250 for babs/bart co-infection testing! vs. igenex's expensive $900 charge for co-infections!
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