This is topic Tested positive for FL1953 Protozoon. in forum Medical Questions at LymeNet Flash.


To visit this topic, use this URL:
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/103985

Posted by richedie (Member # 14689) on :
 
I recently tested positive for this FL1953 Protozoon. I was in my doctor's office when she was on the phone with the Dr. from the lab. He said this ia a major biofilm forming organisism that is seen in some Lyme patients and needs to be treated a little differently than something like Babesiosis. Apparently one of the main protocols for treating this infeciton is plequenil and Biaxin. The other thing the doctor stated was for me to avoid all oils/fats, as much as possible. Just rely on fats you get naturally in food, mostly vegetable. He said this will be difficult, but goes a long, long way in helping the body break down these biofilms and to destroy these organisms.

I found this little blurb toward the bottom:
http://www.betterhealthguy.com/joomla/blog/215-emerging-tests-for-tbis
 
Posted by seibertneurolyme (Member # 6416) on :
 
Did you get a copy of your blood smear? Could you post it?

Do you know if this specific protozoa invades red blood cells or does it just swim around in the bloodstream? Have you ever had any positive tests for babesia? Do you herx on babs meds?

Obviously you had already treated for babs before this test. But my other question is -- have you ever taken anything for biofilms before or any systemic enzymes or anything that would treat hypercoagulation?

What I am trying to determine is if this protozoa can cross react with babs tests or if some people are actually infected with both babs and the F protozoa.

Hubby has not had this test done -- have had a really hard time justifying the $500 expense to myself.

I am very concerned about the low fat diet aspect of this treatment. People with any nerve damage or brain inflammation are already most likely low in the good fats and dietary restriction could cause additional nerve damage in my opinion.

Babesia and I am assuming this protozoa do need fat but they also need iron and folic acid and many other nutrients. Just not really convinced that even if it was safe to severely restrict fats that the protozoa could be starved out. It obviously does not work with iron or folic acid which seems to work with malaria but not very effective for babs.

Bea Seibert
 
Posted by seekhelp (Member # 15067) on :
 
I wish Dr F's lab would lower prices so people can afford these tests. [Frown] At least you found some new info out though. Good luck w/treatment.
 
Posted by richedie (Member # 14689) on :
 
Yes, I was diagnosed with Babs but I don;t recall herxing on Mempron. Then gain, not everyone herxes.

For biofilms? I took Wobenzym enzyms on and off and just started up again. My nutritionist says there are better brands than Wobenzym so I have to research that.

At Fry labs, they say a low to very low fat diet and plaquenil/biaxin are the best at getting people well who have this issue.

I wasn't saying to cut out all fat, but most people eat too much of it anyway. I haven;t heard of anyone with an essential fat deficiency. I just cut out little things, cut out nut butters, no cooking oils, I don;t use any oily salad dressings, no fat in my cooking, cut back on my nuts. So, all the essential fats I get will be mostly from the whole food forms, grains, some nuts, seeds, etc.....I am basically cutting out a lot of junk.

It's an experiment. I will report back.
 
Posted by seekhelp (Member # 15067) on :
 
DR F needs to give this bug a catchier name. The ID code is silly. No doc will take it seriously without a real name.
 
Posted by seibertneurolyme (Member # 6416) on :
 
richie,

Hubby always seems to be the odd man out. Back in 2001 when he first got sick and a couple of years before he was diagnosed he did have an essential fat deficiency. He even got some IV's of fatty acids. His cholesterol was low -- can't remember the number. He had lost 30 pounds from the gastritis.

When he saw Dr PK (the PK protocol) in 2004 or 2005 -- can't remember the date. He still had major issues with low fatty acids. He was even low on arachidonic acid which is a bad fat that most everyone has too much of. He did the IV phophatidylcholine and glutathione treatments for only a very short while -- we could never afford to do the treatment at the suggested doses. But the treatment did seem to help with some symptoms and I think it helped with his digestion as well. This treatment is also called lipid exchange by some docs.

He has been on ox bile supplements since 1999 I think. He does still have his gallbladder but I do think it most likely doesn't work that great. But he was never able to get any of the G.I. docs to order the right scan for that.

I always felt that one of the reasons hubby did not have any neuropathy was because he has supplemented with phosphatidylcholine -- first by IV, then oral and most recently using the cheaper lecithin. He also takes 2 tablespoons of olive oil daily as well. He has cut back on the lecithin since being on malarone and is having some very mild neuropathy in his left arm -- actually this seems to have been coming on for the last year or so. He was using almond butter with the malarone.

I agree it is all a big experiment. Hubby was tested 4 or 5 times back in 2002 -- 2005 and had antibodies to both central and peripheral nervous system tissues. This did not surprise us since he has 4 or 5 white matter brain lesions.

There was a pubmed article published about this within the last year that found this problem in lots of lymies. Their conclusion of course was that that showed an autoimmune process rather than an ongoing infection. In my opinion what the study proved was that something (lyme or babs) was most likely robbing the fats from the myelin sheath around nerves and the body was trying to attack the pathogen.

My comments are not directed at you specifically. I just want others who might want to try a low fat diet to be aware that healthy nerves require good fats and so does the brain. The brain is actually 50 or 60% fat.

Good luck with treatment and be sure and keep us updated.

Bea Seibert
 
Posted by richedie (Member # 14689) on :
 
Well one of the most well known diets for people with MS is a low fat diet. I have a friend with MS and I recommended the low fat diet and he is doing soooo much better.
 
Posted by hadlyme (Member # 6364) on :
 
Dr. F says to try and keep the fat grams between 15-20 a day.

Not all that hard to do that. Yes, he'd like a more veg. diet, but I need my meat.

McDougall diet is what he refer's to.. but all in all, keep it a low fat gram diet.

He has patients getting better on this.

I've been getting better with low fat.. and this week I thought I'd do his 15-20grams.. feel no different yet.. but as I said.. I've been feeling pretty good anyway.

Biaxin/Plaquenal... or Zith/malerone... or Doxy/Plaqyenal... Which ever we can tolerate.. I've been on all those combos.

I'm a retreat though. I had 2 yrs of IV's and all drug combos over 8 yrs ago.

Tested pos. to babs and lyme... but yes, now that I see Dr. F.... he feels it is this FL1952 bug. I asked him too why the name? lab type name I guess.

Yes, this bug does test pos. for babs and is like a babs/bart type combo.

He's doing research at all times. I did not have his expensive tests... he didn't require me to have them. I had my Western blot and bab's essay and that has been enough for my treatment. I've been seeing him for 1 1/2yrs now.

Look at it this way... He's trying to figure out why can't we get rid of this, why can't this disease really be killed. If trimming fat grams is one way he is seeing that that the strength of the biofilm is weakening.. then I'll go with it for now.

Science is always changing... so hopfully real concrete answers are soon to be discovered!
 
Posted by Wolfed Out (Member # 23727) on :
 
To co-sign Bea, do you know if this specific protozoa invades red blood cells or does it just swim around in the bloodstream?

On a side note, I'm glad you have something definitive to work with Rich. You most certainly earned that much in your search for wellness.
 
Posted by richedie (Member # 14689) on :
 
For now I am eating a semi-vegetarian diet, only the leanest meat if at all and whole foods otherwise.....

So why is the fat such a big issue? Has there been research to prove the fat assists the creation of biofilms or that avoiding fat can help break these down?

Also, why the Plaquenal? I talked to my LLMD and she said she never had luck with it.

I never knew Dr. F took patients. I thought he was also research.

Someone I know who has been through a lot of this, had this to say...

"Okay, my LLMD recommends testing for hypercoagulation because he says most Lyme patients have this condition. Now, I thought hypercoagulation would be either hereditary or dietary, but not so--Lyme can also cause this effect. When I was tested, I expected my coagulation levels to be normal, since all my forebears are heart-healthy and my diet is McDougall, BUT my test came back just over the high end of normal. Enough to suspect that it's one of the many factors making me ill.

My doc treats his patients with heparin to reduce the hypercoagulation (you can look it up) and he says most people feel better right away when they start the heparin. In my case, the condition was not severe enough to warrant prescribing this drug.

Instead, I am taking Boluoke lumbrokinase, an enzyme which helps dissolve the fibrin. I haven't been retested so I don't know for sure if it's working. Other natural blood thinning agents that people can try include nattokinase, gingko, and some other things. (Fish oil is on the list too, but no thanks.)

The idea behind the treatment is not only that thinning the blood will make you feel better, but that it will help dissolve the biofilms that the bacteria are hiding behind. Lots of lyme disease patients take lumbrokinase for this purpose. If you are taking antibiotics at the same time, the enzyme can make you herx--I think because it's exposing more bacteria and increasing the die-off.
I had to work up to this gradually. You can do a search on the LymeNet forum for lumbrokinase, it's pretty interesting. Boluoke is the most well-researched, reliable brand.
I hope this is helpful to you. At least this should give you something to look into."
 
Posted by hadlyme (Member # 6364) on :
 
Yes, Dr. F takes Lots of patients. Lab is in the back part of his clinic. He has other microbiologists that work full time in the lab.

Dr.F was a reg. doc that kept having his normal patients come in with bug bites that would then be sickly. That's how he got into this years ago. True love for his patients and their health.

I truly enjoy having him as my llmd. I had another top llmd from NY my first time, and I wouldn't trade anything for now seeing Dr. F.

Plaquenal combined with other abx seems to be his favorite, but like I said.. I've been on Malerone which has been working great until my insurance company is refusing to refill my rx.
 
Posted by hadlyme (Member # 6364) on :
 
From another Dr. F patient:

"Dr. F said he picked up on the low fat diet when talking to patients who weren't eating much for whatever reason.

Found they were feeling better so started to look into why. He has found with his patients that those who actually do the diet, 100% are improving.

He said that you're starving the bacteria (they no longer have fat to feed on), and then your immune system is able to take over to handle the disease. Antibiotics helps the process go even faster."

We're all in this 'crap shoot' together... he's just trying to find answers just like we are.
 
Posted by richedie (Member # 14689) on :
 
You really think the low fat is the answer? I find it tough to avoid meat and fat because I already avoid gluten, corn and soy. So many things I love, gone. [Frown]

I miss making my turkey chilli. Maybe I can find a very lean ground turkey for that.

Do you think going vegan can make a huge difference? It would be easy for me if not on abx or having to avoid soy and gluten.
I always read that animal protein can increase the auto immune response.

I have been doing very low fat since last week and so far I feel no better. Maybe worse.
 
Posted by hadlyme (Member # 6364) on :
 
Personally, no.. I don't think the low fat thing is the answer. I can't avoid meat either. I'll get a headache if I don't get 'meat' protein.

I did 7 days with 10-15 fat grams last week.. haha... didn't feel any different either. Did it to let him know at my next appt. (didn't lose any weight either!)

I know he's really trying... and the patients that have improved on this diet, I think, are just a coincident..

I give him kudo's in trying to figure it all out. I do like him... but yea... I'm going to eat sensible and keep my meat..

You know, we're all so different in handling anything, abx, guten, yeast free... we just have to find what makes us feel better don't you think?
 
Posted by micul (Member # 6314) on :
 
Just because these things use fat for a protective biofilm, doesn't mean that they use it for their main source of energy.

And even if they needed a substantial amount in their diet, there is no way that they are going to be starved out....same thing is true for all the other invaders.
 
Posted by richedie (Member # 14689) on :
 
It still might be worth trying. It can take a long time. I don't think you will notice a change in a week.

This diet flies in the face of Dr. B's guidelines.
 
Posted by richedie (Member # 14689) on :
 
quote:
Originally posted by hadlyme:
Personally, no.. I don't think the low fat thing is the answer. I can't avoid meat either. I'll get a headache if I don't get 'meat' protein.

I did 7 days with 10-15 fat grams last week.. haha... didn't feel any different either. Did it to let him know at my next appt. (didn't lose any weight either!)

I know he's really trying... and the patients that have improved on this diet, I think, are just a coincident..

I give him kudo's in trying to figure it all out. I do like him... but yea... I'm going to eat sensible and keep my meat..

You know, we're all so different in handling anything, abx, guten, yeast free... we just have to find what makes us feel better don't you think?

Then what is the answer for this biofilm issue and the protozoan issue? Most of my friends who have gotten better followed a paleolithic diet which is far from the McDougall or low fat diet.
None of these people took plaquenil either.
 
Posted by richedie (Member # 14689) on :
 
bump
 
Posted by Beachinit (Member # 21040) on :
 
Regarding Babesia and fats, I read that Babesia while residing inside our RBC will not steal cholesterol from the RBC cell membrane but instead has the enzymes necessary to manufacture its own cholesterol "de novo" from scratch. Not sure how to make use of this fact. Another study in dogs with a different species of Babesia showed that aspirin, healthy diet and good general care would convert the infected dogs into asymptomatic carrier state. Another study in malaria endemic region showed that most of those with acute malaria who had been treated became asymptomatic carriers e.g. very low but persistent parasitemia despite clinically adequate treatment. In performing blood smears
a public health publication noted: all smears should be from finger sticks and not from blood drawn into a tube from the antecubital vein. There were 7-fold more parasites found per cubic mm. in the finger-stick blood, it seems malaria and likely babesia prefer the cooler, lower oxygen enviroment of peripheral capillaries.
 
Posted by hadlyme (Member # 6364) on :
 
Richdie...

I don't have any answers for this all. I have been on malarone and now on plaquenal.. and I am still doing a lower fat diet.

I am up to doing 3 mile walks on the weekend and I've always been able to work full time through all this. So.. maybe I haven't been 'bad' enough to see any real results compared to someone really sick.

I believe the answers will come. I think all our llmds are trying to figure this out, and someday there will be a break through to why we're not able to rid this.

I never had a tick bite... so to me this protozoan makes sense. I think my family has a DNA that can't fight certain bug bites... my dad died of ALS (so did an aunt). Guess I'll stick close to my microbiologist llmd to find out any new idea he'll have....
 
Posted by richedie (Member # 14689) on :
 
hadlyme,

How far is Dr. F from me? I am about 20 minutes west of Philly.
 
Posted by richedie (Member # 14689) on :
 
I find the diet thing so confusing. I find it very tough to be vegan as he suggests. I have eaten mostly vegetarian for years but find myself feeling deprived if I go 100%. I also think I have yeast problems so that complicates things.
 
Posted by hadlyme (Member # 6364) on :
 
Richedie...
I meant being close to my llmd as in I'm going to keep going to him until we all can find a breakthrough. He is phys only a few miles from me though here in Scottsdale.

Suggesting us to do a low fat diet is one thing..he's not saying we have to... just would like us to try and follow it. I can NOT do a vegan diet. He knows that and is fine with it. I have to have my meat.

But the point is... I'm getting better eating that way too. Low fat, low sugars, meat... I think it's being smart with our food and go from there.
 
Posted by richedie (Member # 14689) on :
 
I am doing the same as you. I eat meat a few days a week. That's all I really like. But I am finding it hard to avoid some things like gluten because I have so many restrictions. Gluten is hidden in so much. I also find Dr. B's guidelines a bit vague as far as what to avoid. I mean, I do avoid refined carbs and sugars but I eat plenty of good carbs. wish I could at least have sprouted grain bread.
 
Posted by richedie (Member # 14689) on :
 
So is this test bogus? Does it not show or help anything? I spent a $1000 for this test and I would hate to walk away thinking it was a waste.
 
Posted by hadlyme (Member # 6364) on :
 
I don't think the test is bogus...I think what we have been saying under the umbrella of the name 'lyme' is really all sorts of different pathogens from any type bug.

If you really read in here... most people are stating babs, bart... the so called co infections, that are still a 'bugger' to get rid of.

I think we're just touching the surface in what really we're fighting. These bugs test positive to the western blot and smears... but are they (what we have) really a true lyme spirochete or is it a protozoan, or is it ?

Why can't we get 'rid' of whatever we have. Some people get a true tick bite, get abx and get better.

Why can't some of us get rid of this.

All questions on really.. what do we all really have?

We call all tissue's "kleenex".... we all call vector borne diseases "lyme".....

I think these tests he's getting into, show us exactly what we really have. From there we can figure out how to treat it.

But, you know... I do believe in this dr. and his lab.... so I am bias. But he makes sense to me.

I never had a tick bite. I had a blood transfusion in 1981 and a horse fly bite in 1972 that I saw the fly and had a huge red hot lump on my leg. So... did I really get a spirocete? or do I have a DNA that didn't fight other vector borne disease....

That's my big question.... what do I have. Thus my name even before I found F labs. I don't think I ever had lyme... but what do I have. That's why I'm going to keep seeing him until there's answers.
 
Posted by Bugg (Member # 8095) on :
 
I don't understand why they can't give you the scientific name of the protozoa? They don't know what it is??
 
Posted by nspiker (Member # 22824) on :
 
hadlyme,
I couldn't agree more with everything you said!!!

quote:
I don't think the test is bogus...I think what we have been saying under the umbrella of the name 'lyme' is really all sorts of different pathogens from any type bug.
I tested Igenex negative and was never bitten by a tick, but had many mosquito bites and a huge "suspected" brown recluse spider bite.

Yet, every single protozoa medication continues to improve my symptoms....go figure!
 


© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to the Terms and Conditions.

Powered by UBB.classic™ 6.7.3