posted
Hubby had his LLMD appointment May 19th. We did get the prescription for Daraprim (pyrimethamine) but the doc only wants hubby to take this for 2 months and the dose is not as high as we would have liked. Scrip is for 37.5 mg per day - just not sure that dose is high enough, but it is worth a try.
This is the toxoplasmosis med that Dr F suggested at his March conference. Maybe if things go well we can convince the doc to increase the dose to 50 mg and continue on the med for a minimum of 4 months.
The doc also wrote a scrip for Deplin which is l-methylfolate. This is an even more advanced form of folic acid than folinic acid (prescription form is Leucovorin). The dose on this med is 7.5 mg
Hubby is to remain on minocycline, low-dose zithromax, plaquenil and bactrim.
We had an interesting discussion with the LLMD regarding the mystery protozoa. Hubby's LLMD uses F lab extensively and has talked to him recently. His LLMD does think hubby has a protozoa based on his current symptoms - hubby describes those symptoms as a scaled down version of babesia. He has some mild night sweats, various types of headaches, a sense of imbalance but not true vertigo, nausea, sleep disturbances, and milder shaking/seizure-like episodes.
I specifically asked the doc if he believed as I did that a blood-borne parasite was most likely contracted through a tick-bite or mosquito bite or from some other blood sucking insect. The doc was in agreement. But what surprised me was his statement that the bigger question was where the parasite originated - whether it came from a lab for example. He said maybe we were better off not knowing.
The other really interesting comment the doc made is in agreement with an observation I had made previously - of all the F lab patients who test positive on a blood smear the doc has never had a patient who treated and later came back with a negative F slide. He says some do recover to the point where their immune system must be keeping the infection in check even though they continue to have positive blood smears. In my mind this is further confirmation that this mystery bug is more likely to be a protozoa than a bacteria.
Hubby's LLMD has always treated his patients with rifampin and other meds to specifically target BLO. He also said that even patients who took malarone continued to have positive blood smears.
This is all a big experiment at this point, but hubby is ready to try something radical if it will get him his life back after 8 years.
Hubby is to decrease his oral Ativan another 1/2 mg and decrease the Cortef by 5 more mg before his next appointment. The real test of how he is doing will have to wait a couple of months. If he is able to reduce or eliminate either the Benicar or the Lyrica without his tremors, myoclonus or dystonia symptoms returning then I will feel like we have made major progress. Hubby's current PICC line has been in place for 19 months which is the longest he has ever had the same line in place - we are hopeful he can get off the IV phenergan before the PICC line wears out and needs to be replaced.
I still plan to add in the higher doses of Cryptolepis sometime in June as well as it seems to me like this protozoa needs treatment from multiple angles.
Will update this post in a couple of weeks after hubby tries the Daraprim.
Hubby does plan to do a F blood smear in early June and after our discussion with his LLMD I will be in shock if the blood smear is negative even after all the treatment with Alinia, Bactrim, Plaquenil, and Rifampin and Cryptolepis, Olive Leaf, Neem, Stephania, Spiro-Kete, lactoferrin and lysine since his positive blood smear from Clongen in November 2008.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Thank you for the update Bea. I am fairly positive that this is a protozoa as well. Will look forward to your future posts on treatment effectiveness.
Best, Feelfit
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cantgiveupyet
Frequent Contributor (1K+ posts)
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posted
THanks Bea I appreciate the update. I will look forward to your future posts as well.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
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springshowers
Frequent Contributor (1K+ posts)
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posted
It may be important to know that the current F blood smears are not showing the protozoan. So you can not look at that test to know if the protozoan is still there. There may be a relationship between the bacteria seen on the smears and the protozoan but you can not see them on that particular tests together at this time.
For anyone who is going to try this med combo I would make sure you get frequent blood work because there can be severe anemia or renal failure.
Got to be careful for sure and get a doctor to support you.
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feelfit
Frequent Contributor (1K+ posts)
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posted
Springshower,
I am not able to understand your first paragraph. Could you clarify??? Which *tests* are you speaking about F blood smear?
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Leelee
Frequent Contributor (1K+ posts)
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posted
quote:Originally posted by seibertneurolyme:
But what surprised me was his statement that the bigger question was where the parasite originated - whether it came from a lab for example. He said maybe we were better off not knowing.
I am having a difficult time understanding this. Would you mind clarifying for me. Does the LLMD mean it is a manufactured parasite that escaped from a lab or something like that? Or does he mean it may have come from a blood transfusion?
I tested positive on the Fry smear too, but so far we are primarily treating Lyme.
Best of luck to your husband. I hope he has great success with his new protocol.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Per hubby's LLMD recent blood smears from F lab for other patients state that the patient's results are "suggestive of hemoplasma or protozoa" -- someone else posted this recently here on this forum as their test result.
LeeLee,
The LLMD was inferring that the protozoa may have been manufactured in a lab as a biowarfare agent for example. I told him that I had never wanted to believe in conspiracy theories but the more I learn the harder it is to totally rule them out.
Hubby has never had a blood transfusion. He has had PICC lines and been in many ER's and several hospitals. I do know there are many tickborne patients with a positive F smear who have never had PICC lines or ports. There are most likely some who have never been in an ER or hospital either.
Note -- Should add that hubby has routine bloodwork done every 2 weeks. LLMD also wants him to continue with sublingual B12 as well at current doses -- 2000 mcg 2 or 3 times per day.
The meds and supplements I listed above are primarily those hubby has taken since his last bloodslide done by Clongen labs. Theoretically he has treated for both BLO, bartonella, mycoplasma and Babesia or other protozoa since that test. He also treated for both types of organsims before that test as well with other different antibiotics, antiparasitics and herbs.
I personally think he has both a BLO type of organism and an unidentified protozoa. He does respond somewhat to treatment for both types of pathogens, but nothing so far seems to kill these unidentified organisms.
I am cautiously optimistic about the current treatment protocol. In theory it seems like a reasonable approach. Will just have to wait and see though.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks for the update.
You may already know this but please be careful with deplin. That is a huge dose of the active form of folic acid.
If he is one (like I am and a number of lyme patients) who cannot properly convert folic acid to it's active form and he suddenly gets a flood of the active form of folate, he will likely start to purge a lot of toxins, including metals so you may want to have something on board for binding metals and some good detox support.
Also, if he has sulfur issues like some of us do he may end up making more toxins when supplementing with deplin unless he deals with the sulfur issues first. This is because if one has a CBS upregulation or SUOX mutations, supplementation that opens the methylation cycle can dump metabolites down the transulferation pathway creating more toxins in the form of sulfites.
Some people can become very sick when supplementing with even small amounts of the supplements that are used to open the methylation cycle.
If you haven't already, consider looking at the methylation cycle issues. Yasko's work and Rich's simplified protocol. On the other hand, you may want to just go ahead and give it a try and monitor his condition although I think it might be hard to tell whether he is sick from the deplin or a new med.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Thanks for the info. I have always been a little confused regarding methylation cycle issues. You explained it very well.
Hubby had a Great Smokies (now Genova Diagnostechs) genetic detox test done back in 2003 I think when they first came out with those tests. He was missing 1 of the 2 allelles involved in the mehylation cycle is how it was explained to us.
Anyway, Dr P.K. of the P.K. protocol suggested he take 5 mg of folinic acid to compensate for the genetic defect. He has been on and off that supplement for the last 5 years -- sometimes we would run out for a couple of months. Anyway, we had recently increased his dose to 10 mg 2 weeks ago when the Daraprim was first being discussed. His LLMD who is also a nutritionist suggested that the Deplin might be more effective than the MegaFolinic from Source Naturals we had been using.
The mechanism of action for the Daraprim is that it is an antifolate med. Bactrim also works that way but to a lesser extent. Both malaria and toxoplasmosis need folic acid to grow. But my understanding is that by taking the supplements and the med together that the supplements will be available to a person but not the pathogen.
Some of the info I have read on Daraprim suggests even higher doses of folinic acid than the 7.5 mg of Deplin hubby will be taking.
As Spring Showers mentioned one of the dangers of a folic acid deficiency is anemia. But there are other even more serious neurological consequences to folic acid deficiency. Elevated homocysteine is just one more example -- many people do not know that this is a neurotoxin.
Thanks again Terry for the additional info. This thread illustrates just how difficult it is to kill off these blood borne parasites. I don't think very many people think you can kill babesia by starving it of iron. I am not really sure that starving it of folic acid will work either for babesia or the unknown protozoa. I recently read that artemesia and derivatives work by somehow disrupting the calcium channels of parasites.
Wish I knew how the cryptolepis works.
I did recently put hubby back on a low dose of Modifilan so hopefully any detox issues will be covered.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Bea wrote:"I personally think he has both a BLO type of organism and an unidentified protozoa. He does respond somewhat to treatment for both types of pathogens, but nothing so far seems to kill these unidentified organisms."
Blue wrote: "I'm sooooooo on the same boat"
Thanx Bea for keeping us posted. Feel free to PM me with info.
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kelmo
Frequent Contributor (1K+ posts)
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posted
Thanks for the update. It seems your husband has come a long way since I first followed his story three years ago.
You are a good partner.
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CD57
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Member # 11749
posted
Bea, I also wanted to mention the use of Vivaglobin (subcutaneous IGG), just like IVIG, which may be helpful. I really have to wonder if in chronic patients, what is really holding us back is our lack of our immune systems' participation.....had Steve had his IGM/IGA/IGG subclasses run?
I'm looking into this for myself too.
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springshowers
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posted
Regarding blood smear testing
Just remember there were a lot of new ideas and discoveries there in March April and May
I am sure that the tests may reflect those changes and that could be confusing
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MariaA
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posted
Hey, any word on the availability of cryptolepsis again? I just ran out. Grrr.
-------------------- Symptom Free!!! Thank you all!!!!
Even though hubby has a low WBC his IGG subclasses have been normal each of the 3 times they have been tested -- I think the last test was in December 2007. His WBC is not dangerously low -- just slightly in the low range -- does seem to drop lower from time to time when he switches meds and then it bounces back a little.
Maria,
Last we heard Woodland Essence said their shipment of cryptolepis was waiting to clear Customs -- they anticipated it would be available after June 1. Tried to call there today ourselves, but they were already gone for the day. They will be off Monday for the holiday.
Thanks everyone else for the comments.
Yes, I really think hubby is finally headed in the right direction -- if we could just get over these last few hurdles. His doc suggested a prescription med for his insomnia, but we decided to hold off on that.
I really try hard to keep hubby to 10 or less prescription meds at any one time -- usually at least half of those are symptom control meds.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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