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» LymeNet Flash » Questions and Discussion » Medical Questions » bpeck- your expertise, please

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Author Topic: bpeck- your expertise, please
janet thomas
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Barb- You have been where I am going-can you help me find the way please.
I probably have had Lyme for many years. Tested negative for lyme by IFA spring 2004. Last October 2004 I developed new symptoms that compelled my PCP to take me seriously. For each of 5 consecutive days I awoke with a normal temp. Around 4 pm the chills would start and last 2 hours or so. I put on a down coat, got under a blanket and chattered for 2 hours or so. Then I would get too warm, take off all my clothes and stand outside in the cold (don't worry, no one's eyes were offended), the fever would climb to 101-102, stay elevated until midnite or 1 am then return to normal. Next day, repeat. Also, headaches, nausea, no appetite. I have my spleen.

On the 5th day I saw my PCP. Because of my history of traveling in Amazonia 15 years ago he suspected malaria. He started me on doxy, 100 mg BID(THANK GOD). A malarial smear was done, no parasites seen. A Western Blot was done-CDC positive for Lyme. The fever never returned after I started doxy.

Skip ahead 2 months, been on doxy, upping dose-now at LLMD and Babesia titer is back from MDL-positive (surprise?) LLMD told me 6 weeks of 250 mg BID of zithro and one (yes, I repeat, one) tsp of mepron. I did it and felt horrible the whole time. This is a well known ILADS doc that I no longer see.

OK, 6 weeks tx is done, Babesia gone, or so I thought and I start ketek. After 2 lousy weeks I start to feel decent. But then it slowly slips away. Headaches back, bad bruising from veinapuncture, throwing off covers at night, ... Each month for 3 months, MDL gets a negative Babesia PCR and titer on me.

Repeat the Mepron tx I'm told, I tried for 4 weeks and I HATE MEPRON, It messes with my mind in ways I can't handle. Besides, there are so many patients with tx failures.

OK, I start to study it's well known cousin, Plasmodium. Is the key to use tx for P. vivax and P. ovale-the 2 malarias that relapse? The tx I have in mind is 3 days of malarone followed by 14 days of primaquine, to get the little b*st**ds in the liver. I searched babesia and primaquine. Mixed results, works for feline Babesia not for hamsters. Not one study using malarone followed by primaquine. I had blood drawn yesterday for a G6PD, must be checked prior to using primaquine. I am concerned my Babesia may have resistance to ATQ (atovaquone).

I would greatly appreciate your expert opinion and am curious how you decided on b-artemether and doxy. Yes, I know doxy is used in some combinations for some of the 4 malarias.

Thank you, Janet


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janet thomas
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posted 08 June 2005 14:21
--------------------------------------------------------------------------------


[This message has been edited by janet thomas (edited 10 June 2005).]


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valymemom
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I am interested in this babs info and I am sure all of us want to know what works.

Janet,

You are the researcher and we benefit.


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Linda LD
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up!

L


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janet thomas
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up
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bpeck
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Hi Janet.

AT the time (2002), I chose ARTEMOS ( the chinese drug b-artemether) 5 day malaria therapy, because it had the best track record on all species of Malaria in the 3rd world, and the US FDA approved drugs empirically had a poor track record (on Babs) and were very pricey.

I don't have a spleen.. but I may have splenic tissue somewhere in my body cavity.
I did not want to take months and months of Zith or Mepron or Malarone after reading about those drugs.

My Drs. were not supportive of my choice, because ARTEMOS is not a US FDA approved drug, although they monitored me (blood tests) while I was on it and for 2 weeks after - but they were hands off. And I understood their position.

After years of anemia, periodic fever with night sweats, and evidence of damageded RBCs
(and a positive WB for Babs).. these symptoms never came back after my therapy ARTEMOS/DOXY.

In my case, my stiff neck, and headches were Lyme symptoms (not Babs).

------------- AFTER your round of Babs drugs- ----- you mention your night sweats returned- but you don't mention body temp (Fever). Did your fevers resolve?

DO you think that it's possible you have erracticated Babs? Night sweats without fever can be caused by several things, other than Babs. I would think fever would have to be involved with a recrudescence of Babs.

I think the question is - do you still have Babs? -

Sorry I can't help you more.
I can really only tell you what I did and my thinking behind it.

Barb

** Reference 1 -
This is probably where you Dr. got the atovaquone/zith combo for Babs - but if I understood you corrcetly you only had one tsp. of atovaquone.. ??
__________________________________________
REFERENCE 1

Krause, et.al http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11078770&dopt=Abstract

Atovaquone and azithromycin for the treatment of babesiosis.

Krause PJ, Lepore T, Sikand VK, Gadbaw J Jr, Burke G, Telford SR 3rd, Brassard P, Pearl D, Azlanzadeh J, Christianson D, McGrath D, Spielman A.

Division of Infectious Diseases, Connecticut Children's Medical Center and the University of Connecticut School of Medicine, Hartford 06106, USA. [email protected]

BACKGROUND: Babesiosis is a tick-borne, malaria-like illness known to be enzootic in southern New England. A course of clindamycin and quinine is the standard treatment, but this regimen frequently causes adverse reactions and occasionally fails. A promising alternative treatment is atovaquone plus azithromycin. METHODS: We conducted a prospective, nonblinded, randomized trial of the two regimens in 58 subjects with non-life-threatening babesiosis on Nantucket, on Block Island, and in southern Connecticut. The subjects were assigned to receive either atovaquone (750 mg every 12 hours) and azithromycin (500 mg on day 1 and 250 mg per day thereafter) for seven days (40 subjects) or clindamycin (600 mg every 8 hours) and quinine (650 mg every 8 hours) for seven days (18 subjects). RESULTS: Adverse effects were reported by 15 percent of the subjects who received atovaquone and azithromycin, as compared with 72 percent of those who received clindamycin and quinine (P<0.001). The most common adverse effects with atovaquone and azithromycin were diarrhea and rash (each in 8 percent of the subjects); with clindamycin and quinine the most common adverse effects were tinnitus (39 percent), diarrhea (33 percent), and decreased hearing (28 percent). Symptoms had resolved three months after the start of therapy in 65 percent of those who received atovaquone and azithromycin and 73 percent of those who received clindamycin and quinine (P=0.66), and after six months no patient in either group had symptoms. Three months after the completion of the assigned regimen, no parasites could be seen on microscopy, and no Babesia microti DNA was detected in the blood of any subject. CONCLUSIONS: For the treatment of babesiosis, a regimen of atovaquone and azithromycin is as effective as a regimen of clindamycin and quinine and is associated with fewer adverse reactions.

Publication Types:
Clinical Trial


__________________________________________
REFERENCE #2
One of the best articles written on Babesiosis: (Paste this addy in your browser)
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=10885987&query_hl=6

__________________________________________

Reference #3 http://www.ajtmh.org/cgi/content/full/68/2
/153

DESCRIPTIVE STUDY ON THE EFFICACY AND SAFETY OF ARTESUNATE SUPPOSITORY IN COMBINATION WITH OTHER ANTIMALARIALS IN THE TREATMENT OF SEVERE MALARIA IN SUDAN
M. I. AWAD, A. M. Y. ALKADRU, R. H. BEHRENS, O. Z. BARAKA, AND I. B. ELTAYEB
_____________________________________________


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janet thomas
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Barb, Thank you for your response.

I do not have night sweats, but I do wake up feeling too warm and throw off the covers. Course, I didn't have night sweats when I was clearly symptomatic for Babesia with a periodic cycle of malaria like normal temp, severe chills and then fever.

I have not had fever since the first dose of doxy last Oct.

Is there a Western Blot test for Babesia? I am unaware of that.

I don't know if I still have Babesia-perplexing.

Do you know a source for Artemos, email or phone if you prefer. Also, please exact dosing that you did of artemos and doxy or a link to it. The link to the Amer journal of
Tropical Medicine requires a subscription of $180, perhaps well worth the price.

Yes, only ONE tsp of Mepron, the LLMD assured me (despite my repeated questions) that the guidelines were changed and this was soon to be published. This LLMD is on the board of ILADS.


Any other thoughts, ideas, whatever appreciated.

Janet


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bpeck
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Janet:

I had periodic Red Blood cell destruction, RBC fragments in the blood, anemia, high body temps and night sweats (and I also had very high WBC counts). MDL in NJ did the western Blot, but they do not offer an IgM/IgG Western blot anymore for Babs.
Alot of my symptoms were alot like Malaria (and I've traveled to Mexico many many times) but I've never been tested for Malaria.

You'll have to be creative if you import
ARTEMOS.
Here's the manufacturer:

ETDZS Industry Ltd., Chongqing
Add:A2, Jinxin Garden, Golden Burg,21 Huayi Road, Yubei dist., Chongqing
Tel:+86/23/67610178, 67610888 ext.8001-8008 Fax:+86/23/67619098 http://www.artesunate.com http://www.artemisinin.com.cn [email protected]


http://www.artesunate.com/cqdf/2-2.htm


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cafe67
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JT - I can't remember if you told me if you had your hormones checked or not?

Could the warm nights be from that? Don't want to give your age away or anything.....

Doesn't Igenex do the Fish test?

Nucleic Acid Based Diagnostic Tests (PCR and FISH) For Babesiosis

Nucleic acid based diagnostic tests impart enhanced performance, when compared to currently available microbiological and immunological methods for the detection of parasites in test samples. Some of the advantages are:

Increased sensitivity: The nucleic acid based tests are able to detect a specific parasite in a given sample more frequently.
Increased specificity: Accurate identification of biochemically unusual strains of Babesia, and those with dramatically different outer membrane proteins, is possible.
These are direct assays for the presence of the parasite and have the consequent potential to identify the etiological agent.
The assay is independent of the host's immune response schedule. Therefore, much earlier detection of the parasite is possible.
Direct testing allows the monitoring of the efficacy of an antibiotic regime.
There is the potential to detect the etiological agent in samples of tissue normally low in antibody titers (such as skin).
IGeneX has developed two nucleic acid based assays for the direct detection of Babesia in clinical specimens: the PCR and the Fluorescent In-Situ Hybridization (FISH) assays. The PCR assay detects DNA and can be performed on fresh or archived clinical specimens. The FISH assay is performed on thin blood smears and detects the ribosomal RNA of Babesia (thereby indicating active infection).

The PCR Test for Babesiosis using Whole Blood

The PCR-based diagnostic assay for Babesiosis is highly specific and sensitive. It is a three-step assay, performed directly on whole blood. The three steps are:

Hybridization/Selection
Amplification of Babesia-specific DNA
Detection of Babesia-specific amplified DNA fragments
Hybridization/Selection

The hybridization/selection step specifically removes the common PCR inhibitors from the clinical sample and, at the same time, selects, purifies, and concentrates the DNA fragment of interest, thereby improving sensitivity.

PCR Amplification

During the second step, the purified Babesia fragment is PCR amplified with Babesia-specific primers. The primer is a synthetically produced nucleic acid sequence that, by design and selection, contains Babesia-specific nucleotide sequences. Under predetermined PCR conditions, this sequence "hybridizes" or binds specifically to Babesia species and not to other bacteria or parasites or human DNA. Therefore, only Babesia-specific DNA is amplified.

Detection of Babesia-specific Amplified Products

In the third step, the PCR-amplified Babesia DNA fragment is detected by agarose gel electrophoresis. Any of the "right size" amplified product detected by agarose gel electrophoresis is Babesia-specific. It is possible that the WA1 strain of Babesia may be detected by a similar method.

The combination of these three steps imparts a very high specificity and sensitivity to the test.

In order to minimize DNA contamination, separate work stations are utilized for the set- up, reagent preparation, cycling, and gel electrophoresis.

It should be kept in mind that a negative result with the PCR assay implies only that Babesia DNA is not detected in the test sample. The PCR can be performed on ticks and EDTA whole blood, since the organism infects red cells. Samples have excellent stability if mixed with equal parts of 95% ethanol, special IGeneX PCR buffer, or are kept at -70�C.

IGeneX, Inc.
797 San Antonio Rd., Palo Alto, CA 94303 USA
Tel. 650.424 1191 / 800.832.3200 Fax. 650.424.1196


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micul
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Barb,

I get the feeling that you don't like to give info out about what doses you took for your different therapies.

It would be helpful to know what dose worked for someone else. I would like to at least know if you took the doxy along with the Artemos, or if you waited until the 5 day Tx was over?

Micul


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levity101
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Another question for Barb...I hear most people take Artemesinin these days...do you think it is as effective? or is there a good reason to opt for the Artemos?

Thanks,
~Nancy


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janet thomas
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blackmom- as i understand it at this time- artemisinin or artemether is useful for malaria (and perhaps, babesai) only when combined with another another drug.

Malaria is very adept at developing resistance to drugs because humans are not an end host. A person treated for malaria can be bitten by a mosquito and then that mosquito then transmits it to a new person. Thus, the big problems with malaria and drug resistance. Also, malaria is not a bacterium but a protozoan. Malaria may well be the biggest health threat in the world today. You think we have problems with ticks? Malaria can kill rapidly and you can be bit many times each evening by mosquitoes.

cafe 67-I am an HRT expert, yes, I use an estradiol patch, I do not believe my night time hot spells are at all due to estrogen deficiency-I made that mistake for too many years before becoming Lyme cognizant. Thanks for the suggestion and test info.

Perhaps i will test at igenex by fish, and bowen before i proceed, not sure right now.

later

janet


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janet thomas
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Barb, Thank you for taking the time to answer my questions, and for the info you shared with me. Janet
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GiGi
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Riamet by Novartis, the anti-malarial drug, contains an antibiotic. 24 tablets are taken over 60 hours at certain intervals. That's all. It works.

Make sure other Lyme factors are being addressed. Not everything is BB or Babesia.

It works well for Babesia. You might need 2 rounds, with several weeks' break in between, depending on infestation.

Readily available at European pharamcies with prescription. Call a friend or relative.

Riamet is made available to the countries that need it by the WHO as Coartem (sp?), identical to Riamet.

Hormonal imbalances of various kinds cause similar symptoms. So not all sweats are Babesia caused. When the autonomic nervous system is involved, many normals are affected: hot/cold, odors, multiple chemical sensitivities, light, sound, etc...

To bring back balance into the system, all "deficiencies" or neurotoxins need to be addressed; not just bacterial.

You might want to read our doctor's input "Lyme Disease: A look Beyond Antibiotics" by Dietrich Klinghardt, M.D. PhD from a lecture at a recent Lyme Conference in San Francisco. You will find it at www.neuraltherapy.com/articles

Take care.


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GiGi
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Barb, thank you for posting the source for Artemos again.

gg


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bpeck
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Micul:

I took ARTEMOS as directed (5 days) and
took 300 mg Doxy with it. I've been posting this (my Babs) therapy since 2002.
If RIAMET has been available I'd probably of taken that (it wasn't on the market yet).

And I posted my Lyme therapy right along- all the abx I took, with the dosages, and all my supplements every step of the way (and then some.).

AT the time it was not the most popular way to take abx- because I pulsed them (stopping and starting when I felt lousy) and worked up to combo's - followed Donta's theory of alkalizing the cell compartment with hydroxyxhloroquine. And as Gigi (and others) can attest I was taking magnesium also.

So it's not that I don't want to post my whole therapy - it's just that I can't be posting it and repeating it on the boards constantly.

Janet/Gigi:
Your welcome.
Barb


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Mo
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I'd like to add my 2 cents to the thread by saying this treatment, while safe and effective for Maleria, is NOT approved here..
and noone will likely monitor you (except maybe an alternative minded practitioner)..

and though it is safe and effective for Maleria, there are risks and it ain't candy.

I strongly suggest anyone considering it obtain all available info on the drug from PubMed on Artemos, Artemether, and Lumafantrine (that's the abx in Riamet), and also there are PDF's available from Novartis, makers of Riamet (or there used to be, if I can find the link I'll post it)

And think about it, the timing, other meds, ect very carefully,

That's what I did and spent allot of time considering where I was in treatment, and I also chose to go off all other meds ten days before and after administering (there are interactions in the physicians PDF file you must be aware of, I believe Zithro and certain other medications, as well as an issue with a specific heart condition to be aware of. I thought it was best to go off everything else)

If you are doing something on your own advise you should know absolutely everything before you do, so you know what to expect and you'll feel much better about it through the course as well.

I would also monitor bloodwerk, surveilance labs/CBC's before, during, and/or after.

That said, I had responses during the therapy which were very interesting, but might have been scary if I hadn't read so much. I had exacerbation of anxiety and anger the first day, then a fever, and my bloods showed response in eosinophils and other WBC differentials. I also watched my liver.

Everything turned out fine. Artemether has short lived concentration in the blood, Lumafantrine much longer.

Mo

[This message has been edited by Mo (edited 10 June 2005).]


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janet thomas
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blackmom- My lyme brain failed to process your question the first time around (good excuse, huh?)

Is artemisinin as good as artemether? My understanding at this point in time is no, it is not as potent.

Riamet is artemether and lumefantrine.

GIGI- I don't have any friends or family in the UK or Europe-if I did you can bet your butt I'd be asking them for some riamet. It is a prescription drug there,tho.

Janet


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janet thomas
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Barb, You're right, you shouldn't need to post the same info repeatedly. If the search functioned I'd have been able to locate your posts with a simple bpeck and babesia search.

I tried page by page but was unsuccessful.

Are you a success story? I hope so.

Janet

[This message has been edited by janet thomas (edited 10 June 2005).]


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janet thomas
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Mo- I appreciate your cautionary note and at this time I am still collecting information-

the beauty of a short malarai tx is that it is short- I have been thinking that it would be wise not to take any other drugs during that time

I watched a vhs last night of a presentation by Dr J B, 4/2004. He said that Zithromax is not very effective against the Lyme bacteria.

And, for me, my depression has lifted since I stopped the Mepron.

So, I continue to learn what I can glean about TBD.

Thanks to all of you,

Janet


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micul
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Thanks Barb.

I did look at a lot of your old posts, but I never saw any dosages mentioned. Sorry for the bother. I am not sure if I will ever use artemos or Riamet, but I would like to be prepared for the possibility.

MO: Good advice. We get use to taking so many dangerous drugs that it becomes routine. I think that I have lost some of my healthy fear since starting out on abx 4 months ago.


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sweet pea
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Janet,

I tried to email you privately about Riamet, but my message was sent back to me with "fatal errors." If you'd like, please write to me at [email protected]
and I'll resend you my email.


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bpeck
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Janet.

Yes, I'm in Lyme remission.
100% symptom free.
I think Babs is erradicated.

I do not expect to ever erradicate Lyme.
The best I'm hoping for is to have my immune system keep it dormant (just like chickenpox virus stays dormant). And I'll take abx if I get any symptoms back (I recently had a rash that did not respond to conventonal treatments, and finally the Doc and I thought it might be Lyme - I cleared after 30 days on Mino (200mg/day). That was in March
of this year..

But no other symptoms.
for now.
Barb


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