Interesting Malaria find.

[Michele]

I know some RBF folks are dealing with Babesia. If you are, you may also be interested in the research that is evolving on the malaria side of red blood cell parasitic infections.

http://www.physorg.com/news/2011-01-malaria-parasite-caught-red-handed-invading.html

Michele

[Parisa]

I hope this research can also lead to better diagnostics and treatment. I imagine if they know how the paraiste invades the cell maybe they will be able to find a way to disable that mechanism and thereby prevent the disease.

[Michele]

Parisa,
Yes, indeed! When it seems like science is ignoring the pathogenic origin to chronic illnesses, it is refreshing to see things unfold that proves the pathogens. If they can look at malaria microbes, what else can they identify? I sure hope your DH is still doing well!!!

We just recently learned that one of my twin sons has Babesia WA1. When we had him in to our pediatrician for an unrelated problem, we showed our pediatrician our positive Babesia blood test results and asked to have him test this one son. We figured if he didn’t get it from the womb, his environment has been exactly the same as ours since he was born and there were obvious chances he could be affected. We wanted to rule it out. Unfortunately, the tests only confirmed our suspicions about the odds our boys would be affected.

The pediatrician is completely blown away by it all. He has never heard of Babesia beyond understanding it is similar to malaria. He has also never heard of IDSA or ILADS. He assumes that our other son probably has it too. Right now we are looking for a knowledgeable doc that is in our insurance network. The doc treating me is out-of-network and there’s no way four of us can continue on with her care. I am really upset about it all. My obsessiveness to fight the disease leads to research; hence the link on malaria. I also noticed tonight on the CDC website that they just made Babesiosis a mandatory reportable disease as of January 2011.

My Babs labs today are off the charts high after a year of treatment. My DH’s results are the highest he’s had and that’s after 9 months of treatment. I know symptoms are important to consider too, and we are both less symptomatic. But, it’s still discouraging to see nary a dent in the labs. Seeing people like your husband recover is really helpful to me on a night like this…I need that all important hope!

Michele

[maz.aust]

With these diseases it isn’t unusual for labs to skyrocket until they start to come down & yes that can take months; my labs go up & down like a jack in the box from zero to 260RF, from 15 to 60 inflammatory markers (because I was herxing at the time the blood was taken). I tend to concentrate on ‘if I am feeling better & don’t have any noticeable symptoms’ rather than looking towards my labs .. having said that though I am continually monitored to ensure we don’t miss a progression of the disease.

I know this isn’t an easy journey & definitely not a quick fix but my hope relies on the fact that others have got better on AP & I don’t know anyone that has got better on traditional meds.

Hang in there,

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Parisa]

Hi Michelle,

Yes Babs can be a real beast to battle. My husband originally did four months of Mepron with Zith and the LLMD figured we had taken it out and then we focused just on Lyme. After a while I began to figure it was still playing a major role so I encouraged the LLMD to add Babs treatments back in again. My husband then did Malarone and IV Flagyl, Malarone and IV Zith and then finished it up with Qualaquin and IV Clindamycin (I probably am missing something as I’m doing this off the top of my head). That seems to have done the trick for him.

I know what you mean about the finances. Our LLMD was out of network and we would bring the scripts back to our primary and he would then try and get things authorized for us. We had a harder time getting the Babs meds authorized than we did the Lyme treatments.

[Maz]

Michele, just got a chance to read the article – thanks for posting it! Those Aussies are something else, eh? They really are making some extraordinary breakthroughs in infectious diseases.

I’m so sorry to hear that your son is also infected with WA1. 🙁 You must be in a bit of a whirl over this…you, your hubby and now one of your twins, possibly the other twin, too.

I don’t recall, off-hand, how they test for babs – e.g. PCR or antibody. One interesting thing I learned from Dr. P. the other day is that it’s not always a bad sign when antibody tests return higher than expected. Sometimes immune complexes get so bound up that it’s almost impossible to pick up any antibody until the immune complexes are broken up. Over time, as one heals and these immune complexes recede, more antibody appears on labs…which isn’t necessarily a bad thing. It just means the bugs are more exposed to anti-microbial attack. Can you remember how you were all tested for this strain of babs? The above might be totally moot if by PCR.

Interestingly,I recall Dr. S, in GA, in an online chat session discussing how it’s not unusual for people with a positive ANA to find this more elevated as they move closer to remission.

Babs certainly is a frustrating infection, though…and like malaria, is relapsing/remitting. I was reading a book by Greg Mortenson about his efforts to build schools in Pakistan and Afghanistan and, while in a remote village, he had a relapse of his previous infection of malaria and was near death’s doorstep in this mud hut under animal skins. He got so run down, driving through the treacherous Himalayas that he remarked that his malaria made a dangerous comeback. Some strains of babs are without doubt very similar.

[Michele]

Hi Maz.Aust, Parisa and Maz,
Thanks for posting. I really do need some moral support right now. Parisa, I’m blown away by how much more aggressive your husband’s treatment was compared to what I’ve done so far. But, my doctor is being very cautious because she knows how hypersensitive I’ve been for so long. I do appreciate that. She’s using a combination of herbals and anti-parasitics. You have a really great doc to assist you in prescribing the meds within your insurance plan. How often did your LLMD want you to schedule your appointments?

Maz, you bring up a really good point with the PCR question. The last test only checked for live DNA of the Babesia. I think it was a PCR. The previous ones were for antibodies and as you say, it could be picking up a reaction from either dead or living Babesia. Doc claimed she did not have a printout of that PCR for me and that was most annoyingly the only lab result I could not get an actual copy of to take home. So, until I have a printout in hand, I can only take her word for it. It’s good to hear you confirm that the antibody markers can go up; these LLMDs warned me last summer that could happen. I sure hope somewhere researchers like these Aussies unlock the malaria mysteries soon. It saddens me so much for my boys knowing that this is a life-long relapsing/remitting illness. I also wonder how many people carry the parasite unknowingly. I bet I did for years.

Maz.Aust, It’s good to know about the RF variances. My original RF was 104. After IV Clindy with Dr. S in Iowa it dropped to 26? But then rebounded back up. It hadn’t been checked in a year. Yesterday’s result was 102. If I recall, the Rheumatoid Factor is a non-specific marker that may indicate infection. (Can anyone confirm that?) My other autoimmune markers were all normal. Whew. You are absolutely right about this really being the only possible path back to health. I cannot imagine where I’d be had I taken the standard autoimmune drugs 3 years ago.

Selecting a path forward for my boys, is another pandora’s box. That’s where this whole IDSA, CDC, ILADs debate becomes critical for me. I worry about experimenting on myself…but with my boys it’s overwhelming. I don’t even want to tell my son with the confirmed lab result because it will affect his whole outlook on life. To top it off, the poor guy has some weird skin virus that looks like chicken pox all over his body. Doc said it’s fairly common and will run its course in 6-14 weeks. He’s extremely self-conscious about it and he’s in a middle school, so kids are bugging him about it. He just had 12 warts burned off and was in pain from that. Clearly his viral load is quite high. Adding this Babesia result to his current burden is too much.

Michele

[Parisa]

Michelle,

My husband’s Lyme/Babs protocol didn’t start off overly aggressive. He started with Artemisinin, Doryx and Zith and then after six months he rotated in the Mepron. His condition however was deteriorating and he wasn’t tolerating the oral meds anymore and that’s when we switched to the IV antibiotics. The LLMD was surprised at how well my husband tolerated the Qualaquin. Have you tried Flagyl? My husband had great improvements with Flagyl (another drug that some people don’t tolerate at all but my hsuband did great on).

If you spend any time over on Lymenet, there’s a poster named Groovy (I think his name is Jay) and he has some interesting posts on knocking out Babesia.

[Author]

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