Hubby is to start this soon. Still in disbelief that LLMD is going to prescribe this based on 5 minute phone consult today. Don't have details on doseage yet.
Pyrimethamine is a toxoplasmosis med. Hubby will increase his dose of folinic acid (MegaFolinic from Source Naturals) to hopefully prevent side effects. Will continue on Bactrim instead of the other sulpha drug usually prescribed in the combo.
One month on plaquenil has done very little for hubby so doc has agreed to the new med. Will continue on Bactrim, Zithromax, Minocycline. Not sure yet if will stay on Plaquenil or not.
Hubby is allergic to Mepron so can't take Malarone. Has previously done low dose Quinine/Clindamycin (4 months 3 different times) and low dose Chloroquine/Primaquine (Liz 28 protocol -- 2 rounds). Also tried Lariam very briefly. Also Alinia for 8 months (4 months at 500 mg and 4 months at 1000 mg). Been on Bactrim for over a year now.
Not sure what to expect. Maybe hubby will be lucky and the Pyrimethamine will just make him feel better without herxing like the high doses of Cryptolepis did.
Also plan to keep hubby on the low dose of cryptolepis. Think I will drop the neem as that didn't seem to do much either.
Will update this in a couple of weeks after hubby has been on the new med for awhile.
Bea Seibert
[ 07-03-2009, 01:43 AM: Message edited by: seibertneurolyme ]
Posted by kelmo (Member # 8797) on :
Can you PM me and tell me how he was able to get on this?
We see Dr F on Wednesday and are hoping to get my daughter started ASAP.
Please keep me updated on his progress.
Kelmo
Posted by Trevor1 (Member # 15489) on :
When I spoke with Dr. F he had two patients currently on it, and wasn't planning on prescribing it any longer due to heavy side effects. But we all react differently, so hopefully he has success. Just be sure to watch those side effects, they are suppose to be pretty rough.
- Trevor
Posted by seibertneurolyme (Member # 6416) on :
Thanks Trevor. Kelmo -- p.m. sent.
Bea Seibert
Posted by Alv (Member # 15192) on :
Kelmo !
Did your daughter ever treated with AZITHR , BACTRIM , MALARONE and artemisia..in her case?
I know you mentioned before Mino and plaquinil ?
How about HH ? Dr Z says it kills that as well....
Posted by cottonbrain (Member # 13769) on :
wow, thanks for letting us know about this.
can you remind us: did your hubby's fry slide show the 'dots' ON the cell or adhering to the outside?
got my fingers crossed for you!
Posted by tcw (Member # 15698) on :
Bea, both the concurrent use of Bactrim with pyrimethamine and the use of pyrimethamine without a sulfa DHPS inhibitor seems to be questionable, at least according to the GSK notes for pyrimethamine http://us.gsk.com/products/assets/us_daraprim.pdf
Hope you get a chance to talk to the LLMD before your husband starts the med - LLMDs are not perfect, and posts here indicate they can prescribe some risky treatments like Ringers solution during Rocephin treatment, or low dose naltrexone without an opiate washout period.
Thanks for the post and hoping that you see some improvement.
Posted by seibertneurolyme (Member # 6416) on :
Tcw,
Yes I know there is a slight interaction between pyrimethamine and Bactrim. Both are anti-folate drugs. We discussed this with our LLMD a month ago. Bactrim is a sulpha drug but also an anti-folate drug. Hubby is going to increase his dose of folinic acid from 4.8 mg daily to twice that dose.
Since hubby has been on the Bactrim the doc felt it was better to continue with that med rather than switch to a different sulpha drug.
There is an alternative protocol for toxoplasmosis using clindamycin for those allergic to sulpha meds, but his LLMD does not like that med due to the potential for c. difficile -- hubby has taken clindamycin in the past without any problems but the doc did not want to prescribe that.
It will be sometime next week before hubby starts the new med. His LLMD is off on Fridays and still needs to decide whether to continue or stop the plaquenil.
Cottonbrain -- it is hard to say based on a 2 dimensional picture but my opinion is that the Fry slides showed dots on the outside of cells. Hubby's Clongen slide definitely found only extracellular organisms which they now think are protozoa.
Bea Seibert
Posted by joysie (Member # 11063) on :
Bump
Posted by seibertneurolyme (Member # 6416) on :
Update-- Hubby started the pyrimethamine (Daraprim) on May 20. So far so good. He says it is helping with his dizzyness / feeling of imbalance. Also some improvement in headaches and eye pain. Unfortunately since he started the Plaquenil about a month ago he has been having problems with insomnia -- seems like the daraprim has compounded that problem.
Hubby says the Daraprim seems to hype his brain up similar to the problems he has had with Rifampin in the past.
Have been using various herbal things for insomnia that worked in the past but so far they aren't helping much. If he stays awake too long then he gets more nauseated and has stomach spasms. But so far his G.I. symptoms haven't triggered too many tremors. Sweats have not been too bad with this med so far.
Hubby's RBC has gone down and the bilirubin levels have gone up -- this always seems to happen when he is treating babesia/protozoa as the meds kill off red blood cells.
Springshowers,
Glad you are doing well on this med. Just hope we can convince hubby's LLMD to continue the med beyond the 8 weeks he has prescribed it for.
Bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
Springshowers,
The doc would only prescribe 37.5 mg. Hubby woke up 2 nights in a row with bad dry heaves, sweating and shaking so have decreased his dose to 25 mg for a few days.
I added 5HTP to his supplements and that seems to have helped a little with the insomnia.
Bea Seibert
Posted by kelmo (Member # 8797) on :
Bringing this back up. Hi Bea. My daughter is going to start the protocol your husband is on. She will be on Daraprim and zith because Dr. F is having too many problems with sulpha drugs.
She is going to be taking 15mg daily of the folinic acid. She will have her blood checked and monitored every two weeks.
She has made such progress over the past three years, but needs to clean up band 41, which we believe to be the toxoplasmosis type protozoa.
She is dropping mino and plaquinil. Dr. F believes that when you starve the protozoa, the biofilm will naturally dissolve.
He also says not to soldier through. Take it for a couple of days, then take a couple days off.
Would love to hear more about your husband. And I'll let you know how my daughter does.
Evaluation of different treatment regimens for neurotoxoplasmosis (CNS-T).
Sighinolfi L, Catalini MG, Antonucci G, Narciso P, Libanore M, Galgani S, Tozzi V, Gritti FM; International Conference on AIDS.
Int Conf AIDS. 1991 Jun 16-21; 7: 253 (abstract no. W.B.2284). Infect. Dis. Depts.: S. Anna Hospital, Ferrara, Italy
OBJECTIVE: To evaluate different treatment regimens for neurotoxoplasmosis in AIDS. METHOD: 96 patients (pts) were retrospectively reviewed for treatment efficacy estimated on resolution or persistence of CNS-T lesions by computed tomography (CT). Four mair groups of acute, 42 days followed by maintenace, therapy were individued: 1) 24 pts treated with Pyrimethamina (P) less than 50 mg+Sulfadiazine (SD) less 4 g q.d.; Group 2) 12 pts treated with P greater than or equal to 50 mg+Sulfalenum (SL) greater than 4 g q.d.; Group 3) 13 pts treated with P less than 50 mg+SL less than 3 g q.d.; Group 4) 13 pts treated with P greater than or equal to 50 mg+Clindamycin (C) 900-1200 mg t.i.d.-q.i.d.. Statistical evaluation was performed with the Wilcoxon test for paired data. RESULTS (see table) TABULAR DATA, SEE ABSTRACT VOLUME. Five pts with allergy to SL and C were treated with P 50 mg+Clarithromycin .750-1 g with encouraging results. CONCLUSIONS: Results obtained with different therapeutical regimens are not statistically different, but there is a better trend using doses of P greater than or equal to 50 mg+Sulfonamides greater than or equal to 4 g per day or P+C. Pyrimethamine+Clarithromycin can represent a valid alternative, but needs extended trials for confirmation.
Posted by kelmo (Member # 8797) on :
He is using zith. I think I wrote that in my earlier post.
Posted by seibertneurolyme (Member # 6416) on :
Update on Hubby:
Just got biweekly bloodwork back today. Red blood cell count remains low and bilirubin (total) and indirect remain elevated but no major changes. Something is still killing off red blood cells too quickly. Hubby also had a Reticulocyte count done which was normal -- means he is producing red blood cells at a normal rate.
The truth is I am not really sure how hubby is doing. We have been playing around with doseages on meds and time of day etc and so far nothing has really stopped the insomnia. This started with the plaquenil back in early April. The extra 5 HTP seems to improve hubby's mood, but didn't do a whole lot for sleep. Have stopped the plaquenil, but that really doesn't seem to be helping much either.
Does seem to be helpful if hubby gets to bed as soon as possible after 9:00 p.m. -- if he stays up until 10:00 p.m. then he gets an adrenal surge and getting to sleep is pretty much a lost cause until the wee hours of the morning.
For the last 10 or 12 days hubby has had one nightly spell. He is usually sweaty and has nausea, dry heaves and tremors. 12.5 mg of IV phenergran will stop all the symptoms. These are milder versions of the spells he used to have multiple times nightly for many years.
Either the Daraprim is killing something off or some pathogen is multiplying at night. I honestly don't know at this point.
These spells had totally stopped once he got to a high enough dose on the cryptolepis tincture. And the spells had been absent except for maybe once every week or two since February. We totally ran out of cryptolepis a couple of weeks ago about the time the spells came back. Our order of cryptolepis should be here tomorrow so it will be interesting to see if it stops these spells again.
Hubby cut his Benicar from two doses to one dose daily and that has helped some with the dizzyness and feelings of orthostatic hypotension. Also decreased his Cortef by another 5 mg -- down to 15 mg daily from 30 mg since last October when he crashed. So in some ways he is doing better since he has been able to reduce some synptom control meds.
Hubby has been having problems with shoulder pain and lower back pain. Nothing major, but we found a new physical therapist/sports medicine person he is going to see in a couple of weeks. Has not been to a chiropractor or massage therapist since the last chiro accidentally broke his rib in early Janauary. That seems to have healed up ok.
On the positive side -- headaches and eye pain and the worst of the dizzyness seem to have all improved directly as a result of the Daraprim. Daytime nausea seems slightly better also. And for some strange reason hubby's hormones seem to be in overdrive -- he has even commented that his beard seems to be growing in faster.
Hubby had a new F slide done on June 1 but will probably not get the results until his next LLMD appointment on July 1.
Bea Seibert
EDITING TO ADD: Hubby's experiences may not be representative. He had already been on Bactrim for over a year before starting the Daraprim. Bactrim is also a folate inhibitor although much milder than Daraprim.
[ 06-17-2009, 06:58 PM: Message edited by: seibertneurolyme ]
Posted by feelfit (Member # 12770) on :
Thank you for the updates Bea and Kelmo.
Posted by kelmo (Member # 8797) on :
We have never tested pos for Lyme. She was pos on bands 30 and 41. 30 is now gone. She was loaded with viruses, they all seem to be gone.
Her body temp ran 95 for three years. It's now a consistent 98.
Three years ago riding in a car to the doctor's office was all she could do that week. Last month, she flew to chicago by herself and walked an entire day. (With the help of Tramadol)
I can't speak for anyone else, but this is my daughter's experience. If you see, I've been on this board reporting about her since early 2006.
Posted by seibertneurolyme (Member # 6416) on :
Cottonbrain,
Hubby is not being treated for toxoplasmosis. Yes he is taking a toxo med. But the med is also used for malaria. This is all a big experiment.
We are assuming that hubby has the mystery protozoa that Dr F is researching -- his lab has said the mystery protozoa has some genetic sequences found in malaria and also some genetic sequences found in toxoplasmosis. That is the reason that Daraprim is being used.
Bea Seibert
Posted by kelmo (Member # 8797) on :
Exactly what Bea said. I am not good with words lately.
Posted by kelmo (Member # 8797) on :
My daughter was one of the earliest to have a picture done at Fry Lab. It was 2-3 years ago. In her picture, it shows "Bartonella, Babesia, and possibly Theileria".
That was the thoought back then. This was for research purposes, not as a concrete diagnosis.
Posted by karenl (Member # 17753) on :
Kelmo, you wrote:
" but needs to clean up band 41, which we believe to be the toxoplasmosis type protozoa"
I am in exactly the same situation. I have the Fry test and band 41, all other testing is negative. Did you talk to Dr. Fry? Did he definitely confirm the toxoplasmosis? Band 41 has a tail, how can it be toxoplasmosis?
Posted by kelmo (Member # 8797) on :
He is confident it's from that family. There are a couple of organisms they have their eye on. We really couldn't get too far in our exam.
We are having a hard time finding a med to go with darapram that will not be contraindicated with my daughter's sleep meds.
Sulpha is the drug of choice, he doesn't like it and what it's done to the few patients he's using this protocol. So, he is using zith, which may take a little longer, but much safer for prolonged treatement.
BUT...at this time, he is preparing for his talk comging up, so we are put on hold until we hear back from him.
That's okay, he wanted a few days of letting her body rid itself of mino and plaquinil.
By the way, I am only positive on band 41 as well. Since we have all been together as a family, I probably have it, too, but affecting me in a different way from my daughter.
Later Kelmo
Posted by seibertneurolyme (Member # 6416) on :
Haven't been on LymeNet much in the last 2 weeks -- wish I could report that it is because hubby is doing better. I think I goofed up. Concentrated too much on treating a possible blood parasite and neglected the mystery bacteria. Hubby has been paying the price.
We stopped the Plaquenil as hubby just couldn't take the insomnia. Now we have stopped the Daraprim as well. Also plan to stop Bactrim per his LLMD.
For the last 2 weeks hubby has had many symptoms return -- the worst is the nightly dry heaves and shaking episodes which wake him and then it takes hours for his nervous system to calm down enough to get back to sleep.
These episodes are less severe than in the past, but back in April had calmed down to maybe once every 7 - 10 days. Nightly or more frequently is just not a good trend.
Actually his LLMD thinks the facial tics and twitches which have also increased are a sign of lack of bloodflow to the brain from inflammation.
Hubby's blood pressure continues to be too low even after he decreased the Benicar to 5 mg once per day (was 2 times daily). So we are also stopping the Benicar.
Hubby will continue on Minocycline at 100 mg daily and Zithromax at 600 mg 3 times per week. Will add in Factive -- pulsed 5 days on and 10 days off.
Starting hubby back on HH and SpiroKete and will continue increasing cryptolepis. Will also add lumbrokinase.
Hubby continues to have low RBC and low WBC and elevated total Bilirubin.
On a positive note -- hubby had an annual eye exam and for the 2nd year in a row his vision actually improved slightly.
Got to go for now, but will try to post an update when hubby starts on the Factive.
Bea Seibert
Posted by Pinelady (Member # 18524) on :
Bea is it possible his endocrines have switched on