I am a chronic lyme patient of many years with co-infections, and have just been diagnosed with cryptosporidium--an intestinal parasitic infection which may be dangerous to an immune compromised patient.
Has anyone with Lyme and co-infections had it? Is there any treatment for it? Is a Lymie like us considered as immune compromised as an HIV patient?
I have no idea how I contracted this, and live in the city. I have been to an ID doc who looked at me like all the abx I took is what did me in and made me immune compromised.
Anyone have any ideas what to do?
I am nervous and am feeling lousy. I think this is the end of the road for me.
Posted by linky123 (Member # 19974) on :
I think I remember a documentary about this.
The parasite had apparently gotten into the water supply in Milwaukee, WI.
Those with compromised immune systems were getting sick from it.
You might want to google to see what was done about it.
You probably need to find a doctor who will prescribe anti-parasitics.
Do you have a llmd that can help you with this?
Posted by Talktel (Member # 7980) on :
I'm by an llmd. He says I'm his first patient ever with this parasite, and its not Lyme related. He doesn't know how to treat it.
the irony is I am on an anti-parisitic med with other meds for my Lyme protocol, and have been on and off these meds for most of the year. But I got this parasitic infection anyway.
Right now, a bartenalla positive blood test came back after many years ( I don't know which bartenalle) so he put me on liposomal artemesinin, which is also parasitic.
So now all I'm on is liposomal art and alinia, and no other lyme meds.
( He does basically conventional meds) I feel so lousy, between lyme and my stomach.
I've looked to see if any lyme patients had this intentinal parasite which is not lyme related --and survived--and I can't find anyone who had these two issues together.
Posted by Talktel (Member # 7980) on :
liposomal artemesinin is anti- parasitic, I meant to say.
Posted by surprise (Member # 34987) on :
Oh, I believe many of us are carrying all sorts of parasites if we come in the door w/ lyme and co.,
because lyme itself captures your immune system and weighs it down/ not functioning strong, allowing other possible opportunistic infections (like parasites or yeast) to grow.
Parasites are nasty and gross, sucking up your nutrients and carrying crud.
Good you're treating, but not fun/ can be hard. I'd say clean your diet, make sure bowels are moving, detox.
Posted by Keebler (Member # 12673) on :
- A friend of mine went through this many years ago.
If your fridge has a water dispenser or internal ice maker, that could be one thing to consider as source -- of course it would have to have first come through your city / village / well [whatever your main water supplier].
Bottled water is not always so safe, either, as some sources /practices are dubious.
Your county water dept. should be able to trace any know cryptosporidium outbreaks - if discovered - or if others were affected by suspected water borne illness, perhaps they would have some records and help trace the source.
I can't give this more thought right now but wanted to be sure you may not be continuing exposure.
You may never know the source but it's extremely important to try in case it's local and it's not been corrected. -
Posted by Keebler (Member # 12673) on :
Some good basic detail here. The thing is that I strongly disagree with their saying there is no specific treatment.
This can be very dangerous, very, very dangerous and specific treatment is absolutely vital, especially for those who are immume-compromised (and, yes, that includes those with lyme. Lyme dismantles the immune system in various ways).
There are both Rx and naturopathic treatments but it really needs to be very direct treatment. Basic herbs are just not going to cut it.
Allicin, Berberine, Andrographis, Colloidal silver are all strong contenders but a ND would have been knowledge on this avenue. A LL ND even better.
And this may be a time for strong anti-parasitic Rx, with herbal support fully on board as well.
And, a RIFE MACHINE would be most practical right now to address this condition in your body . . . (along with Colloidal silver in your water). My thoughts, of course. Best to seek out expert advise.
RIFE Machine - Reference LINKS -
Posted by Keebler (Member # 12673) on :
- Better detail about cryptospordium, I think, will be in some of the websites here.
Also take note that some food and water borne parasites can become chronic. That's why I bristle at anyone / any "site" who says there is no particular treatment.
Another note. I mentioned Berberine above. It may well be suited here for the gut but only as certain concentrations would it be able to get into the brain.
I am not sure about whether cryptosporidium can get into the brain but it's a very important question which requires a clear answer. And, it just seems reasonable that whatever method(s) undertaken to address it, they can permeate tissue all throughout the body.
FOOD POISONING - Reference and Educational Links -
Posted by Talktel (Member # 7980) on :
thank you! Wow, I need to look through the links.
From what I'm reading, this cryptosporidum sounds like it can even be fatal---Keebler is that true?
I'm reading it can go to respiratory, I don't know about the brain, but it sounds like it can migrate.
Of course the ID doc told me I'm "healthy". I wish I were~
Is it possible to clean these parasites up and get rid of it? and get back to Lyme treatment?
Would a lyme friendly GI doc (maybe one that specializes in this?) be an option if I don't have the money for an LLND? And money for the herbs?
Posted by Keebler (Member # 12673) on :
- Talktel,
I did not want to be the one to tell you but, since you ask, yes, cryptosporidium can be fatal. Usually, though, it's not and most do seem to waltz by but for some, it can be very serious, indeed.
A lyme friendly GI doctor probably won't be so "advanced" as to treat this, but you can ask. My experiences with lyme "friendly" doctors is that they are nice, generally educated but not really too far beyond the basics as to be able to step up to the plate.
But, since this is not about lyme, he/she may well be well informed and able to address cryptosporidium for you -- and all the while not put you done or roll eyes at the immune compromised nature due to lyme on your plate.
Can you find someone with a rife machine?
Colloidal Silver?
You may have to do a lot of research yourself on this. I'd suggest looking into
HEPAPRO ALLICIN, too.
Were it for myself (very hard to take most Rx, these three things would top my list). But you'll need to find out just what the best Rx treatment for this is, anyway. And it may work for you, at least for the start to support with liver herbs and then carry on with key anti-microbial alternative approaches.
You might search at "Townsend Letter" website. -
Posted by Keebler (Member # 12673) on :
- I did not get very far with a cross search for terms: herb, herbal, allicin, berberine or silver, though, for what it's worth:
Below, just one of many that could be of interest, though a ND would be best to determine if this hold hope or what's been studied since 2007 in this area. And the nature of cryptospordium would need to well understood.
The effect of blueberry extracts on Giardia duodenalis viability and spontaneous excystation of Cryptosporidium parvum oocysts, in vitro - 2007
Excerpts:
The protozoan parasites Giardia duodenalis and Cryptosporidium parvum are common causes of diarrhoea, worldwide. Effective drug treatment is available for G. duodenalis, but with anecdotal evidence of resistance or reduced compliance.
[written in 2007] There is no effective specific chemotherapeutic intervention for Cryptosporidium . . . .
[some about how blueberry extract may be of help] -
Posted by Keebler (Member # 12673) on :
- If you are not now gluten-free, it seems that this infection can trigger celiac disease so now would be an excellent time to eliminate all traces of gluten from your diet, just to give yourself a better chance of recovery from this.
Many with lyme have "leaky gut"
For those in whom gluten causes trouble, one way it damages is by causing "leaky gut"
when the lining of the gut is irritated and stuff that should not pass through does so, it can lead to lots of complications. Protection of the gut lining is very important and that often involves avoiding gluten.
A good non-dairy PROBIOTIC is also vital.
I would also strongly suggest: no dairy.
Dairy can cause the entire GI system, and sinuses, lungs to harbor phlegm. And that phlegm / thicker mucus can harbor all kinds of nefarious pathogens. Best not to give them a slime field to hid and multiply.
I didn't really get very far with this but it may help you to see my study path, though no splendid hits, some to think about:
1/4 of the way down, some detail about cryptosporidium
-------------------
RIFE is the place I'd put my energy into seeing if you know anyone who will let you go to their place and use theirs. They could not accept payment but you could offer to do something nice for this gesture. -
Posted by Keebler (Member # 12673) on :
- Searching your posting history, some time ago you asked about rife. If you got Rosner's book then as someone suggested you might look through it. It may not mention cryptosporidium (or it may) yet there are some important considerations for those with lyme when using rife.
Of all the things to consider, since you say you cannot afford to consult a ND on this matter and the research will take you - really forever - to figure out what you should do that MIGHT work . . . I'd get some good allicin in you and also start down this path:
Google: "rife frequency" cryptosporidium -
Posted by Keebler (Member # 12673) on :
- One last note. Since I see in your profile that you are a journalist, you can likely take it from here.
You say you are feeling awful and that hampers energy to do this but I hope you can direct a friend or family member to help you search for ways to clobber this.
However, you say that you "think this is the end of the road for me."
I'm not usually the pep squad and I don't have the right cheery words but this need not be the end of you. I'm sure there is some way to clobber this. Absolutely, it's very hopeful, I'd say. There is a way.
My guess is that the journalist in you will find that way. That's what keeps me going more than anything, the journalism gene of curiosity - and determination to connect some dots, find the source - the real issues & the real answers.
Take care. -
Posted by Keebler (Member # 12673) on :
- Okay, one more "last" note. I mentioned Hepapro Allicin above. It can cross the BBB. I've studied this at length and found it worked so well for me when I could afford the full protocol some time ago.
[ 03-29-2015, 09:46 PM: Message edited by: Keebler ]
Posted by Talktel (Member # 7980) on :
Keebler,
Thanks for all your input!
I will research it--as you say the journalist gene in me.
If Ic an function. Family members may not be so embracing of lyme and even though this is a mainstream parasite, they roll their eyes and say there she goes again.
as will the doctors.
I'll look up some of those herbs you recommended, and run it by my LLMD, who is very gung-ho on research, and see that is doesn't contraindicate anything else I'm taking.
I'll be further in touch.
I do know of someone who has a rife machine but she lives two hours away from me.
Posted by Talktel (Member # 7980) on :
am going to GI doc who I got referral to who specializes in parasitic diseases.
I hope he is also openminded, becasue his secretary said he has many lyme patients too. I asked chronic lyme? and she didn't say no.
I asked if he's open to chronic Lyme, and she sounded fairly positive, and said he's wonderful. I don't know.
I am going to him for crypto treatment, but now the LYme is not being treated at all.
am very weak now.
Posted by Talktel (Member # 7980) on :
I am optimistic about him-- that he may be lyme friendly -- because the office said that Lyme patients are immunompromised.
Posted by Keebler (Member # 12673) on :
- Good luck. Sounds like he may be a good doctor for this situation.
Be sure to get your water tested. Your county HEALTH department also may be a better resource in this than your water dept. but both should be contacted to get more detail of other reports &/or how / when this might have happened IF connected to your own water supply.
It could have been from foods, etc. though. -
Posted by linky123 (Member # 19974) on :
Will keep you in my prayers, Talktel.
Hoping this doctor will have the answers you are looking for.
Keep us posted.
Posted by Zoe (Member # 45457) on :
I have had giardia and crypto. I am surprised you are having difficulting getting treatment for this. I think I picked mine up traveling in Mexico, it is very common. I was treated by a ND many years ago and unfortunately cannot remember protocol. I know I took a good probiotic. I was able to get rid of it rather quickly and this was while I had Lyme but I had yet to be properly diagnosed, so immune system was compromised. Best wishes, Zoe
Posted by Talktel (Member # 7980) on :
Zoe really! Another chronic Lyme patient with CRypto--and giardia!
you were able to get rid of it?
As I told the health department, when they contacted me and asked me if I travel, I said the most traveling I've done was from my bed to my chair.
I keep on reading that immunocompromized people like us Lymies don't get better. And don't get rid of it-because of chronic illness.
How did you manage with treating the lyme at the same time?
I am quite debilitated again. I think I was more functional this year...to a point. Dizziness, ringing in my ears, and neuro-cognitive issues and fatigue, numbness and tingling--all back.
My LLMD got a bartenalle H. positive on my blood work, so now he wants to revamp the whole protocol.
All I'm on now is the alinia and the liposomal art.
Zoe, you had yours treated by an ND. Do you think a GI who specializes in this could treat it?
Cannot afford an ND, and this GI takes insurance.
Posted by Talktel (Member # 7980) on :
Linky, thank you for thinking of me..
Posted by Talktel (Member # 7980) on :
City is testing the waters.
Cannot imagine how I got this.
Posted by GretaM (Member # 40917) on :
Yes. Got crypto from water fountain this fall. (the kind where filters need to be changed. ) It was tested after and had high fecal count. Yuck.
Alinia helped me with the crypto. Alinia is great stuff.
I agree with above poster. It is very common. Especially giardia. Try not to stress over it. Alinia will help you
Hugs
Posted by lpkayak (Member # 5230) on :
Many years ago i was prescribed aricept for it
My lyme had not been dx
I was going to doc after doc trying to figure it out and an alt type in nyc dx and prescribed for me
Gi docs have been wothless for me when it comes to parasites
Posted by lpkayak (Member # 5230) on :
Many years ago i was prescribed aricept for it
My lyme had not been dx
I was going to doc after doc trying to figure it out and an alt type in nyc dx and prescribed for me
Gi docs have been wothless for me when it comes to parasites
Posted by Talktel (Member # 7980) on :
Crypto gone!
GI doc called, got a negative stool culture from his own lab, and I hope its gone forever.
Posted by Talktel (Member # 7980) on :
are stool cultures accurate that its g?
Posted by SacredHeart (Member # 44733) on :
If it was negative, I wouldn't continue to worry about it. Did it come up in blood work as positive the first time, or was it a stool test?
Could the first test give a false positive? Try not to worry, it sounds like it can be killed even if you are sick with lyme.
Posted by Talktel (Member # 7980) on :
it was negative with a stool culture.
This doc has a lab that he himself founded which he says is the only one of its kind on the US.
I think he said his lab tests the DNa of the specimen.
I was so brainfogged that I oouldn't really absorb what he was saying.
Posted by Talktel (Member # 7980) on :
orginal specimen that was positive for crypto was also a stool culture from a typical laboratory
Posted by Keebler (Member # 12673) on :
- How did your water test? If you have old ice cubes or foods make with water, etc. consider.
Did the water dept. & county health dept. get back with you? -
Posted by Talktel (Member # 7980) on :
no they didn't. should I contact them?
Posted by Keebler (Member # 12673) on :
![[group hug]](graemlins/grouphug.gif)