Don't know anything about the med you listed. In my opinion, what are needed are antimalarial drugs -- the mystery bug(s) are blood borne parasites similar to malaria or babesia. I think it is the 2nd med in the malarone (not the mepron) that may be effective -- the second med is a very toxic drug that is sometimes used to treat toxoplasmosis.
Bea Seibert
Posted by sunnymalibu (Member # 9586) on :
Alv posted this link on the thread about the mystery bug that I think is very interesting. A lot of info about treating.
I think the mystery bug could be different bugs. Weather it's inner or outer?
Bea, thanks so much for the link. So Malarone can help either or outer for some people after several months. I am a single parent now, I can't afford this Med.
Hi Malibu,
This is just my opinion but I am close to the border like you.
I have been on humaworm for about a month's time.
I have no clue weather Alv is right or wrong, but looking at this article it is a bit shocking to say the least.
The toxoplasmosis parasite may also trigger the development of schizophrenia, bipolar disorders, Parkinson's Disease, Tourette's syndrome and attention deficit disorders. The University of Leeds' Faculty of Biological Sciences has shown a statistical link between toxoplasmosis infections and incidences of schizophrenia. Research finds that a person with schizophrenia is more likely to have toxoplasmosis than the general population.[6] The parasite produces an enzyme called tyrosine hydroxylase which may contribute to the development of these psychological disorders by affecting the production of dopamine. These changes in the chemistry of the brain can significantly affect behavior. Well documented is dopamine's role in mood, sociability, attention, and motivation and sleep patterns. Schizophrenia has long been associated with dopamine, which is the target of all currently available schizophrenia drugs. Research is ongoing to confirm whether or not there is a causal link, which is proving difficult because there are many factors involved. Health risks of toxoplasmosis include occasional fatalities.[7]
Hugs, Roz
Posted by METALLlC BLUE (Member # 6628) on :
quote: Acute
Medications that are prescribed for acute Toxoplasmosis are:
* Pyrimethamine -- an antimalarial medication. * Sulfadiazine -- an antibiotic used in combination with pyrimethamine to treat toxoplasmosis. * clindamycin -- an antibiotic. This is used most often for people with HIV/AIDS. * spiramycin -- another antibiotic. This is used most often for pregnant women to prevent the infection of their child.
(Other antibiotics such as minocycline have seen some use as a salvage therapy).
[edit] Latent
In people with latent toxoplasmosis, the cysts are immune to these treatments, as the antibiotics do not reach the bradyzoites in sufficient concentration.
Medications that are prescribed for latent Toxoplasmosis are:
* atovaquone -- an antibiotic that has been used to kill Toxoplasma cysts inside AIDS patients. [13] * clindamycin -- an antibiotic which, in combination with atovaquone, seemed to optimally kill cysts in mice.[14]
However, in latent infections successful treatment is not guaranteed, and some subspecies exhibit resistance.
This is exactly what Dr. Fry is trying on patients. It goes to show you how closely related to Malaria, Babesia and Toxoplasmosis this infection is. It appears to be a hybrid -- and quite resilient to treatments.
Posted by kelmo (Member # 8797) on :
Metallic, I don't know how many patients he has on a protocol yet. I know my daughter isn't on one yet.
He told me yesterday that he is not finding toxoplasmosis.
Posted by METALLlC BLUE (Member # 6628) on :
The treatment appears to be the same though, right? Same family of drugs. A cross over between Malaria, Babesia and Toxoplasmosis?
Posted by Alv (Member # 15192) on :
True Metallic Blue energeticly the bug jumps on all 3 and never gets eradicated with other metods..so plays in this frequencis but is none of them .
Posted by tcw (Member # 15698) on :
I think the best info we seem to have right now is coming from LymeMD, unless there is some recent, specific information out of the office of Dr. F.
LymeMD indicates that some patients seem responsive to Bactrim/Malarone combo. I tend to agree that the proguanil part of Malarone may have effect that the atovaquone does not - it seems that plenty of patients here on Lymenet had Bactrim/Mepron combos with disappointing results.
LymeMD posted that he would not be using more toxic anti parisite meds yet, which seems prudent. Doses of pyrimethamine/sulfad(iazine-oxine) used to treat acute toxoplasmosis have a significant risk of SJS/TENS. Just how much that risk would apply to typical Lyme patients is kind of unknown though, in my mind. Most of the data for acute cerebral toxo treatment comes from AIDS patients where the infection is a medical emergency.
Still a lot of mystery in this bug.
Posted by Hoosiers51 (Member # 15759) on :
tcw,
In what entry does he say he won't be treating patients with the more toxic drugs? Was it from a long time ago, etc?
I just don't recall him saying that, and I do enjoy his posts that involve the mysterious pathogens, so I'm wondering if there was one I missed. If so, I'd like to go back and read it.
Thanks.
Posted by seibertneurolyme (Member # 6416) on :
Hoosiers,
See comments by lymeMD in the following link near the end.
The fact that LymeMD says a patient on 3 IV antibiotics had 3 different unidentified organisms in their blood to me is further confirmation that at least some of these pathogens are protozoa rather than bacteria.
I don't agree with his comment that more aggressive Lyme treatment is the answer. Personally I don't see how you could get much more aggressive than 3 IV antibiotics all at once.
Hubby is one of the few unfortunate people who has an allergy to Mepron so he can't take Malarone. We are still trying to talk his doc into an alternative protocol. Have a phone conference scheduled in 2 weeks.
Plaquenil doesn't seem to be doing much. Hubby is back to having night sweats, red blood count has begun decreasing again and dry heaves and seizure-like spells (mild thankfully) have returned. All this since decreasing cryptolepis dose.
bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
tcw -- Looked up SJS/TENS -- looks to me like the risk is partly from sulfa drugs and also independent of meds several tickborne diseases can cause this syndrome -- including rickettsias, mycoplasma, tularemia and malaria.
Every med has side-effects -- some known and others unknown. Toxoplasmosis meds are probably not the first choice for babesia treatment and maybe not even for the mystery protozoa -- but if someone has failed multiple treatments with multiple malaria and babesia protocols and still has an unknown protozoa then I personally think it makes more sense to treat the known infection with toxoplasmosis meds rather than wait months or maybe even years for an actual ID of the organism. So far hubby's LLMD is not convinced, but at that time he had not talked to Dr F -- will know more in 2 weeks.
Bea Seibert
Posted by METALLlC BLUE (Member # 6628) on :
quote: but if someone has failed multiple treatments with multiple malaria and babesia protocols and still has an unknown protozoa then I personally think it makes more sense to treat the known infection with toxoplasmosis meds rather than wait months or maybe even years for an actual ID of the organism. So far hubby's LLMD is not convinced, but at that time he had not talked to Dr F -- will know more in 2 weeks.
That's been my stance thus far.
Posted by Hoosiers51 (Member # 15759) on :
I'm wondering if the combination of Malarone and Bactrim would be useful for this bug.
Malarone and Bactrim both can treat toxoplasmosis. Maybe together they would be enough.
Anyone taken that combo and still tested mystery bug positive?
I would only be using the Malarone for the Proguanil component in it.
Posted by TO LIFE (Member # 12371) on :
Hi Folks, I really appreciate your wisdom from the bottom of my heart. My hope is the mystery bug is not this. What's your thoughts?
Chagas disease is an inflammatory, infectious condition caused by a parasite and which is transmitted to humans through the feces of the infected reduvid bug.
Chagas disease is common in South America, Central America and Mexico, the primary home of the reduvid bug. Chagas disease has also spread to the southern United States in recent years.
Chagas disease, also called American trypanosomiasis, has two phases. During the acute phase, signs and symptoms are often mild. Left untreated, Chagas disease may become chronic, possibly resulting in serious heart and digestive problems.
Treatment focuses on killing the parasite and managing signs and symptoms. You can take steps to prevent the infection.
Posted by seibertneurolyme (Member # 6416) on :
To Life,
I am pretty sure that Chagas Disease is inside the red blood cells. The mystery bug is freely floating in the blood and is not actually intracellular.
Bea Seibert
Posted by bears1985 (Member # 17271) on :
The latest research is...there are 2 organisms in the blood. Gram negative "rod" and a Protozoan. The Gram negative rod is opportunistic and the Protozoan seems to be the major problem. Testing will begin in a few weeks for drug sensitivity and the organisms have been cloned. There will be over a thousand combinations tried.
Posted by METALLlC BLUE (Member # 6628) on :
quote: The latest research is...there are 2 organisms in the blood. Gram negative "rod" and a Protozoan. The Gram negative rod is opportunistic and the Protozoan seems to be the major problem. Testing will begin in a few weeks for drug sensitivity and the organisms have been cloned. There will be over a thousand combinations tried.
Thanks for the update.
Posted by Hoosiers51 (Member # 15759) on :
Is this an update from F Labs or Clongen?
If it is from F labs, does this mean that what Dr. F was seeing on the smears was actually two different things that look the same on the smear?
Posted by bears1985 (Member # 17271) on :
It is not from Clongen. Two bugs in the same smear.
Posted by tcw (Member # 15698) on :
quote:Malarone and Bactrim both can treat toxoplasmosis. Maybe together they would be enough.
Hoosiers51, based on the continuing posts regarding the use of this combo by LymeMD, I suspect that this may be the case for some patients. I have not seen pre/post treatment test results for anybody using this combination though, so who knows? We do not even know how many "mystery bugs" have been identified at this point.
quote:Chagas disease may become chronic
TO LIFE, I think that Dr. K at Clongen would have picked up on this if it were the case. Trypanosomes are much larger and differently shaped then the bugs reported on the LymeMD site, and shown on the F labs pics. The motile bugs are reported to be smaller than T. gondii, so they are definitely smaller than a Trypanosome. That is a good thing in my mind - Apicomplexans respond to treatment much more so than Trypanosomes it seems.
Does anybody know why Clongen could or would not get an 18S rRNA sequence on the motile bug? Is it a cost issue, technical issue, something else? I seem to remember they would do a 16S on a bacteria, but not an 18S on a protozoa?
Posted by TO LIFE (Member # 12371) on :
Hi,
Their are thousands of different protozoan's. So in my opinion, they is likely more than a few different mysteries.
Alot of the strong parasite meds. aren't even available in the States.
I just don't want it to be too little to late for any of us.