posted
Been to 2 LLMD's treated but not getting better. Had rash and 1 band on west blot, negative for bart & babs, but we think due to night sweats she had babesia.
has had 4/5 different treatment regimens.
Stays up all night, then sleeps 15+ hrs a day. Then not rested after sleep.
Any ideas on other possible issues. Is it normal to be so ill for so, long.... taking to regular MD today to get checked for diabietes, hormones
Is 46 and has otherwise been health up until illness.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
Whats antibiotics have been tried and for how long? Oral or IV?
Good diet? List of symptoms?
What test did you use for co-infections? Not getting better for a long time and having night sweats... I could almost guarantee babesia could be a problem
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Blake,
As stated earlier, we would need more information, but with the little you did give, I would say that I too tested negative for co-infections but my LLMD treated me for both bartonella and babesia due to a clinical diagnosis.
I wasn't getting better until we moved over to some of those protocols and basically the testing for co's isn't any better than lyme. Not being doctors, we can't say for sure what is going on with your wife, but I can say that for me, I was getting these bed wetting soaks that appear to have been babesia in my particular case.
Good luck and keep us posted on how things work out for your wife.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
My guess, from the info you have given here, is that she needs to be treated for babesia. She saw improvement from Mepron, otherwise, no improvement for over three years.
Babesia needs to be treated first. The liver is important , so the details in the treatment need to be determined by the LLMD, but my guess is she won't get better until the babs is treated first.
It took me many months to make a dent in the babs ... four weeks is nothing.
I would also suggest that she focus on detoxing .... many times insomnia at night is caused by the body trying to detox. Since she can sleep during the day, it doesn't sound like she actually has trouble sleeping.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
It's awful when someone you love is sick and not getting better. Based on my own experience what you describe sounds like it could be babesia. It took three tests before mine came back positive but fortunately my LLMD started treatment well before it was confirmed. It took several cycles of Mepron/Zith topped off with quinine and clindmycine before I started to feel better and several of the symptoms thatyour wife is experiencing subsided. It's bad enough to think something else might be going but again, based om my experience, if you didn't have the symptoms before you were bit, you got to go with lyme and a possible co-infection. Sorry I can't be more helpful.
Posts: 228 | From Wassaic NY. USA | Registered: Aug 2002
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
The risk to our liver is very real for all of us and greater for some of us than others.
Be sure your wife follows a very nutritious diet and supplements with some liver support. Her doctor should be able to recommend something. A well nourished body can fight off the illness and the drug side effects better than a poorly nourished one.
Eat as much raw fruits and veggies as possible because they give a strong dose of nutrients.
The exact right diet varies from patient to patient so I won't try to tell her what to eat.
Some consistent foods to avoid are:
sugar and processed foods.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Levaquin has helped me a lot in the past few weeks.
If co-infections are not addressed properly, than the infection rages on.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
If you can't get a doc to treat the babesia without a positive test, on clinical symptoms alone, then maybe try to get a blood smear done to look for the parasites. There aren't tests for all the babesia species, so negative antibody tests alone are not a guarantee of no babesia. This is what happened to me, finally found it in a blood smear by a lab that knew what they were looking for. Hard to get microscope work done these days because it is labor intensive. Most labs only want to do automated testing.
I also had some liver problems with mepron, had to stop for a while, but finally got rid of babs (knock on wood), with mepron, zith, and short course of artemisia. This took many months of treatment.
Posts: 8430 | From Not available | Registered: Oct 2000
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
It IS normal to be ill so long with chronic Lyme-and a certain percentage of people never go into full remission or get completely well- they stay on "maintenance abx" so they don't decline. In our local group that's about 1/3 of the people, I don't know how it is where you live. But some people never get un-chronic. They stay chronic. IMO WITH MANY IT MAY BE UNTREATED COINFECTIONS!
I agree re the Babesia- and also, it sounds like she has gone on & off abx and perhaps needed more aggressive treatment than she has had- sick that long I would have expected IM to be brought up-
I was on Mepron 2 years- don't know anyone else that long but don't know a SINGLE person who got well from babs with ONE month of Mepron!!! not one- so I would agree with everyone so far re addressing that- also you can add Artemisia to Mepron to double the punch!!!
But her liver- you do have to be careful- people made some good suggestions-
But reading her treatment I am not surprised she is still chronic- I have never seen a longterm chronic go into full remission with orals except for Bactrim- other than that only with IM or IV- and sick this long is is longterm chronic now.
WAIT- I forgot Art Doherty- he went into full remission with high dose AMOXICILLIN!!! I forgot! But still, VERY rare-
With her illness, diagnoses & treatment history if she was my daughter (I know, she's your wife but I don't have a wife I am just htinking of someone I love) I would try to get her on IM BIcillin,Mepron&Zithromax & Artemisia ...!! IV is a risk. IM you just do one shot a week and it is stronger than most orals... Best wishes, truly, Sarah p.s. AND I knew one longterm chornic tertiary Lymie sick NINE YEARS who went into full remission- 3.5 years does NOT mean she can't do it-!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Hi.My LLMD tested for lyme babs and erch and since only lyme came up positive that is the only one he is treating me for. I am 100% sure I have babs though based on my symptoms and have not felt better since treatment which i started in july. Actually I have gotten a lot worse. I feel this is because I am not being treated for babs and am not on any detox supplements. However, I am waiting for supplements I ordered from cowden protocol which are supposed to help detox, they should be here by monday so Ill see if they help.
This week I will be searching for a new llmd who will treat me for babs based on clinical symptoms and not the blood test. I too sleep 15 hours a day and am up all night. I also am in bed when I'm awake from the severe fagigue and before I started treatment I was able to get out of bed in the morning and go to work for 2 - 3 hours a day, and still spend time with my friends and go out on the weekends, but now seem to be completely bed ridden. I am able to walk if I have to but it's completely exausting.
So it seems as me and your wife have somewhat similar problems. I would get her treated for babs and doing detox cause thats the next route Im going. Ill let you know the outcome
Posts: 370 | From NJ | Registered: Dec 2007
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robi
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Member # 5547
posted
If the mepron worked, but she could not tolerate it, perhaps she could try malarone. Malarone has the same active ingrediant as Mepron but in a smaller dose. Malarone also has a second ingredient called Proguinal. This drug has worked for some that were mepron failures. It is usually taken with a macrolide such as zithromax or biaxin.
Artemisinin is also a babesia drug that can be taken with the above combo.
Please check all of this out with your doc. I am not a doctor.
She should follow the above suggestions for liver support.
Milk thistle is an excellent liver supplement. Also, an herbalist can make a liver support/detox tea that can greatly assist. It is usually made of dried herbs and is prepared at home buy boiloing the herbs. Basically, from the dried plant to your stomach. I have found this to work MUCH better than store-bought teas.
Hope this helps. robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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Vermont_Lymie
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Member # 9780
posted
Agree with the above feedback. Babs tests are unreliable, so testing negative does not mean she does not have babs.
Since she had some relief from mepron and babs tx, that is a good indicator that should probably continue.
One month of mepron and zith would not cure babs.
I was on malarone for a little over 5 months. My doc thinks malarone alone can be an effective tx for babs; as someone mentioned above, it has two active ingredients so unlike mepron, does not have to be taken with zith. (It can be taken with zith, but it does not have to be for the resistance issues).
Also, what does amoxy was she taking? Perhaps not high enough; I took quite high-dose amoxy (10.5g/day) and found the higher doses of amoxy far more effective than lower doses, for me. Best wishes.
Posts: 2557 | From home | Registered: Aug 2006
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, so the details in the treatment need to be determined by the LLMD, but my guess is she won't get better until the babs is treated first.![[Frown]](frown.gif)
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