The health officials say that B. microti is the most common strain on the East coast.
B. duncani is only supposed to exist on the West coast. Not true. I get positive results for B. duncani with the same frequency as positive results for B. microti. Serology tests exist for these two strains. I finally got Labcorp to find the right code; they now do the test for B. duncani. Labcorp and Quest are a little mixed up. The old name was B.WA1- the new name is B. duncani. Labcorp and Quest still call it B. WA1. If you order serology for B. duncani they have no idea what you are talking about.
Clongen has a "species" PCR test for Babesia. It includes around 15 known species but does not include B. duncani. For some reason this PCR has to be ordered separately. This can get a bit expensive. I have found many patients who have negative antibodies for both B. microti and B. duncani test positive on the Clongen Babesia "species" test. The theory that many otherwise unspecified strains of Babesia exist in Lyme patients is held up by this data.
On a separate note- we have not yet identified the parasites which are seen in many patient's blood. One organism has been described as tear dropped in shape and has a tumbling motion. It appears to respond to Malarone not Mepron! If Mepron doesn't work for parasite- Babesia like symptoms, it may be worthwhile switching to Malarone.
A positive response is easy to determine- the Herx can be quite dramatic.
Malarone and what? What's the combo they are finding effective?
ReplyDeleteThanks!
Hubby had what was presumed to be an allergic reaction to Mepron about 5 years ago. It was his first babs med. He got hives and then his whole body broke out in welts. This was 10 days after starting the Mepron. His skin turned bright red like a sunburn and he gained 10 pounds of fluid weight. The skin on his ears and fingers peeled off.
ReplyDeleteHave since heard that quite a few lyme patients get a rash from Mepron and continue taking the med. Have always wondered if this was a herx or if hubby had a true allergic reaction?
Have wondered if he could take Malarone since the dose is quite a bit lower than the normal Mepron dose?
Obviously neither quinine, primaquine, chloroquine or Alinia worked on hubby's mystery bug found by both Fry and Clongen. And he couldn't tolerate the psych side effects from Larium. That doesn't leave many choices.
Just for clarification -- the Clongen mystery bug is now assumed to be a bloodborne parasite and not a bacteria. Correct?
ReplyDeleteAlso, it is not a babesia species? Or do you think it is some as yet unidentified species of babesia?
Seibertneurolyme-
ReplyDeleteHow's your husband doing- still better? What meds is he on these days?
The reaction he had to the Mepron sounds allergic. Often allergic reactions are not dose related. The hives are not a good sign.
For these patients that respond to Malarone and not Mepron, the active drug is probably the proguanil. Pyrimethamine (used in cerebral toxoplasmosis at a high, almost toxic dose and in some of the older malarial preparations often in combo with a sulfa) would probably have similar actions. Trimethoprim-sulfa (Bactrim) may have some effect also, although probably not as much.
Dogdoc,
ReplyDeleteThanks for asking. Hubby is stable but struggling. Neuro symptoms of tremors and seizure-like episodes almost totally gone -- the best he has been neurologically in 8 years.
General malaise and G.I. symptoms remain. Unfortunately there is a shortage of the African herb cryptolepis in the U.S. right now. Had to reduce his dose to 1/3 and other herbs I have tried so far not nearly as effective.
No change in meds -- doc waiting for news from either Fry or Clongen to make changes. Remains on mino, bactrim and low dose zithromax. Also on low dose Lyrica and low dose hydrocortisone and low dose Benicar. At least we have been able to reduce the Ativan to the lowest dose in 8 years.
The lysine and lactoferin seem to still be helping -- red blood count still creepi9ng upward and is now in normal range although white blood count is still an issue. Note -- rumor has it that Fry has been able to culture his pathogen in arginine thus the explanation of taking lysine to counteract that amino acid.
Is your hubby making any progress? How about the rest of the family?
We are all doing pretty well. Glad to hear some your hubby's signs are holding steady, especially neurologically! I know that has been a long, tough road. It will be interesting to see what the different labs come up with.
ReplyDeletehttp://www.lymedisease.org/news/lymepolicywonk/82.html
ReplyDeleteLymeMd, just wanted to make sure you saw this.
This comment has been removed by the author.
ReplyDeleteI recently had a big breakthrough in my battle with Lyme. My left lung became paralyzed in the late 90’s due to a paralyzed hemi diaphragm. I was told by the medical experts that this happens to a percentage of the population and we get used it after time. Last Saturday I coughed up a ton of Mucus and started having pain at the sight of my paralyzed hemi diaphragm. When I cough I can feel both my right and left diaphragm tighten something that I have been missing for the last 11 or 12 years. Doc switched my meds last month and I was sick for a couple of weeks and when that broke my lung started to work.
ReplyDeleteThanks Doc
Is this what Fry is also finding?
ReplyDeleteHave you heard about "Fansidar"? it is medication wused in South America for malaria - babesia's are malaria type parasites remember? - In South America it is called "Falsidar"or the very blessed "Aralen"; I saw how it worked, saving tons from the malaria, called there "Paludismo" and more over, helping others that already had it as a cerebral malaria, very near to death. Fansidar, falsidar or Aralen should be an option when there's no option; I think! My humble opinion!
ReplyDeleteHope we all can find the answers, yeah, we will!
M.J.
LymeMD, I saw in this post you have been able to get LabCorp to test for Babesia WA-1 (Duncani) IgM and IgG antibody levels.
ReplyDeleteI was told today they do not do this. The lab tech had no idea what I was talking about.
Can you please share the billing codes for this antibody panel so I'll have for future use? Anything you could do to let me know quickly would be greatly, greatly appreciated. Thank you much.
I recently experienced a similar rash after starting Mepron. I was taking a higher dose than normal (2 tsp, twice per day) in an effort to produce a noticeable herx, which might help confirm the Babesia infection (I have many of the symptoms, but tested negative for Babesia). I'm also taking Rifampin, which reduces the effectiveness of Mepron, along with other antibiotics for Lyme. My lower torso started itching on the night of the 4th day of taking Mepron. I didn't notice the rash until the next day, it appeared as many small (pore-sized) red spots/bumps around my pelvic area. The rash got worse and spread over the next two days, and I took my dose back down to 1 tsp twice per day. On the 7th day, the rash had become pretty bad, and I stopped taking the Mepron altogether. The rash continued to get worse on the 8th day, covering most of the "heat areas" of my body (pelvis, sides, armpits, inner arms, and back of the upper thighs). It resembled a bad sunburn, with lots of little raised red bumps on newer areas of the rash (the inner arms, in particular), and incapacitated me similarly to how a bad sunburn would. It was quite sensitive and uncomfortable/painful, but also very itchy at times. The affected skin became dry and scaly, and bathing (even in an oatmeal bath) made it worse (probably by drying out the skin further). Non-greasy vitamin E skin lotion with aloe seemed to help the affected skin stay more hydrated and less itchy, but also made it get much redder (almost to the point of being purple, but really just a darker shade of red) and more sensitive for a time. During the 8th and 9th days, I also noticed some minor swelling of my eyelids, and my eyes stung a little at times. I noticed they appeared a bit yellow. I also noticed some minor tingling in my throat/windpipes once or twice, and developed a minor sore throat. The rash didn't start getting noticeably better until the 10th day (3.5 days after my last dose of Mepron, 6 days after the first signs of itchiness). It is currently my 11th day, and the rash is still healing. The affected skin is still noticeably red, inflamed, scaly, and sensitive. The vitamin E lotion continues to help. During the last few days of the Mepron therapy, I noticed improvement to some of my Babesia symptoms (headache, cognitive clarity, fatigue), but it was difficult to tell for sure, given the short period of time and with the rash complicating things. Now I'll be looking for alternatives to Mepron...I just wish I knew for sure if this rash was simply an allergic reaction to the Mepron, or possibly a sign that it was actually fighting an infection (Babesia or otherwise). Hopefully this account helps anyone else who experiences something similar.
ReplyDeleteWhat is the recommended dosage for Malarone?
ReplyDeleteI'm not sure for Malarone, but for Mepron I believe the usual recommended dose is 1 tsp (750mg), twice per day, with fatty foods. It's also essential to avoid fat-soluble antioxidant supplements: CoQ10, Alpha Lipoic Acid, and Vitamin E in particular. The informational document that comes with the Mepron goes into a lot of detail about treatment outcomes, pharmacokinetics, and side effects for groups of patients treated with doses of 1000 mg or 1500 mg once daily, and 750 mg or 1000 mg twice daily. I don't believe the documentation recommends a specific dose or dosing schedule, but does stress the importance of taking the prescribed dose.
ReplyDeleteOops, I was wrong. The documentation does recommend a dosage. 1500mg (10mL) once daily with a meal, for prevention of PCP (P. carinii pneumonia), and 750mg (5 mL) with meals twice daily for 21 days, for treatment of mild-to-moderate PCP.
ReplyDeleteThe greater part of critics are parasites, who, if nothing had been written, would find nothing to write. See the link below for more info.
ReplyDelete#parasites
www.ufgop.org