posted
My husband David just completed a 6 month cycle of Malarone that was supposed to be the silver bullet. It didn't work and now he is worse off than before. The doctor says he might have a co-infection called Bartonella (spell right?) He says that the Malarone probably did kill the Babesia parasite, but that David is suffering from this now. However I don't know if this Bartonella causes all of my husband's symptoms. The doctor was shocked and confused as to why David wasn't showing any improvement at all. He has excrutiating nerve, bone, and muscle pain 24/7. His muscles get so tight that they are hard as bricks, he twitches constantly with spasms in his legs, his spine pain is the worst pain of all, he falls alseep like a narcoleptic, his memory is completely shot to hell, he can't concentrate on anything but the pain he is in, most days he can hardly make it out of bed, he gets near-migraine level headaches daily, his limbs fall asleep at any given moment and if he sits still for longer than 5 minutes his muscles and joints lock up on him, and he has become so paranoid and OCD that I am scared. Are all of these symptoms caused by the Bartonella...or does anyone think he might still have the Babesia? And what is the best medication to take to fight the Bartonella, when he had a bad reaction to Rifampin?
Posts: 4 | From Rowlett | Registered: Oct 2010
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posted
I was on malaria type meds with antibiotics my first time (8yrs ago) for 2 yrs straight.
This time I've been on combo's for over a yr.
My guess too, is that 6 months is not enough to do what is needed... how long did he have this before treatment? Usually the longer you have it UN treated,that same amount of time might be needed IN treatment.
I agree with asking if your dr is a ILADS member...
Sometimes different symptoms arise as you treat it too. It's amazing how many different 'stages' I've had.
Best of luck with this.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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posted
I think it could still be babesia. I don't know about bart. Has he been treated for Bart? Rifampin helped me a lot.
He sounds a lot like I used to be. If he has Babs, he needs to treat w/multiple agents. In my case, I'm taking Malarone (750mg twice a day), Artemisinin, roxithromycin (sim to zithromax) and recently added Flagyl. I was taking chloroquine and it helped some too, but my insurance stopped covering it for some reason.
How much Malarone was he getting?
My shoulder muscles were so hard at one time. At the same time, I felt like I couldn't hold my head upright. It was just terrible. They started to improve after I tried different topical treatments on them. LED light therapy helped. So did massaging the muscles with a number of different things, bee venom ointment, ozonated olive oil, flagyl cream, other anti babs herbs (boneset, etc) You could also try massaging w/virgin coconut oil. It has powerful antibiotic qualities and is also good for the skin. All of these things, including the light therapy made me herx. A word of caution. the first time I topically treated my shoulders, the muscles seized up so tightly, the pain was excruciating. However, after the muscles finally relaxed, which took a while, they felt better than before.
You still have to treat w/internal meds at the same time as well.
When all of this took place, I don't think I was being treated for Babesia yet, then after Babs treatment started, I broke out in a rash all over my shoulders and back. It took months and months of work to get through the worst of it, but I'm much better now.
In his guidelines, Dr B says that the main reason that Babesia treament fails is under dosing of meds. If you've never read his guidelines, you should look over it. It's available in the files section on this site.
My muscles are no longer tight, I can hold my head up normally, and I'm clearheaded most of the time. I'm still dealing with it, but on a much smaller level. I recently broke out with some rashes around my arm pits and on part of my right rear shoulder. I could be wrong, but I see these rashes as a good thing, like maybe the microbes are trying to get out of a toxic environment. Then I treat the rashes topically w/coconut oil and other things and I herx some more.
I'm still aggressively treating Babs, both topically and orally, and I still herx, but I'm much more functional than I was.
If you want to try massaging his muscles w/something, I think the easiest thing to start with would be virgin coconut oil. Start with a small area to see how his muscles responds, then proceed carefully. That's what I'd do.
This illness, IMO is the epitome of "No pain, no gain".
Posts: 975 | From California | Registered: Apr 2007
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TF
Frequent Contributor (5K+ posts)
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posted
Well, I hope he wasn't taking malarone by itself.
From the Burrascano lyme treatment guidelines:
"the current regimen of choice for Babesiosis is the combination of atovaquone (Mepron, Malarone), 750 mg bid, plus an erythromycin-type drug, such as azithromycin (Zithromax), clarithromycin (Biaxin), or telithromycin (Ketek) in standard doses.....Treatment failures usually are related to inadequate atovaquone levels. Therefore, patients who are not cured with this regimen can be retreated with higher doses (and atovaquone blood levels can be checked), as this has proven effective in many of my patients. Artemesia (a nonprescription herb) should be added in all cases." (page 24)
750 mg bid means 750 mg twice per day. That is the recommended dose. Some people have found that they have to take more. Also, the medication has to be taken with sufficient fatty food or it will not be absorbed.
One of the lyme docs I recommend has the patient's atovaquone blood levels checked regularly to prevent treatment failure. If the blood level of the med is inadequate, the patient will not be cured.
Also, hubby needs to be on artemesinin, as stated by Burrascano. This is taken a few days per week, such as 3 days in a row, then 4 days off or some other "pulsed" type of schedule.
Adding artemesinin made a major difference in my babesiosis treatment.
According to Burrascano, the treatment of choice for bartonella is Levaquin.
"The drug of choice to treat BLO is levofloxacin. Levofloxacin is usually never used for Lyme or Babesia, so many patients who have tick-borne diseases, and who have been treated for them but remain ill, may in fact be infected with BLO. Treatment consists of 500 mg daily (may be adjusted based on body weight) for at least one month. Treat for three months or longer in the more ill patient." (page 24)
See page 26 of Burrascano for a list of symptoms for each of the diseases. The migraine-like headaches are a symptom of babesiosis. The muscle twitches and tremors can be bartonella or a lack of magnesium. Lyme disease depletes our bodies of magnesium.
I certainly hope the doctor has also treated your husband for lyme disease. If not, that is an absolute must.
Also, I hope the doctor has him taking supplements recommended as "required" by Burrascano such as magnesium. See page 28. This is what it says about magnesium:
"Magnesium supplementation is very helpful for the tremors, twitches, cramps, muscle soreness, heart skips and weakness. It may also help in energy level and cognition. The best source is magnesium L-lactate dehydrate (�Mag-tab SR�, sold by Niche Pharmaceuticals: 1-800-677-0355, and available at Wal-Mart). DO NOT rely on �cal-mag�, calcium plus magnesium combination tablets, as they are not well absorbed. Take at least one tablet twice daily. Higher doses increase the benefit and should be tried, but may cause diarrhea. In some cases, intramuscular or intravenous doses may be necessary."
I hope he is taking magnesium, and, if he is, I would consider increasing the dose until it causes diarrhea.
Since your husband is so very, very ill, it is important for him to see the best lyme doctor possible. Also, it would help him a great deal if you learned as much as you can about this disease. Studying the Burrascano Guidelines is the best thing you can do.
Burrascano is the lyme disease guru of the U.S. and the world. When he was still practicing medicine in N.Y., people came from all over the world to be treated by him. His Guidelines are used by doctors all over the world.
I went to a doctor who followed the Burracano lyme treatment guidelines. He got rid of lyme, babesiosis and bartonella for me. I completed my treatment 5 1/2 years ago and I am still symptom-free, enjoying my life.
I really hate to hear of a person suffering as much as your husband. The doctor is the key to getting rid of this disease from hell. Can't emphasize that enough. The doc is the key.
You want a doc who has cured at least 3 other people of this disease. That's because many doctors treat lyme disease, but only a few know enough to get rid of it for a person.
I suggest you contact the lyme support groups in your state (see Support Groups on left side of page) to find out if there are any good lyme doctors near you. It seems to me that folks on this board from Texas are saying they now have to go out of state for their lyme treatment. The one lyme doc they had has stopped treating lyme.
I will pray for your husband and you as you make this journey together. Let us know if we can help you further. We would be happy to do so.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Just wanted to add that I didn't take rifampin while I was on the Babs treatment (Malarone or Mepron).
Posts: 975 | From California | Registered: Apr 2007
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posted
Wow, thank all of you so much for your advice and thoughts and prayers. Yes, the Malarone was the only med David was taking at the time because that was all we could afford. And he was on 4 a day of the 750mg tablets. We have no insurance. I will read Dr. B's guidelines and hopefully get an answer as to where to go from here with David's treatment. And, yes, his doctor is a lyme expert. We have to go out of state to Louisiana to see him every few months. He had prescribed David many other medications to take along with the Malarone, but as I said above, we couldn't afford the others. We have looked into a lot of free medication programs and for some reason or the other have not been able to get them. I know all of you understand me when I say how terrified I am. I have watched him progressively get worse the past year and feel so utterly helpless and desperate. We have two children that need their Daddy...this illness has especially affected our son. He is only 6 years old and really wants Daddy-play time and hasn't had it for so long. We just want to be a normal family again. Thanks again everyone I will read those guidelines and hopefully know where to go from here.
Posts: 4 | From Rowlett | Registered: Oct 2010
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