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» LymeNet Flash » Questions and Discussion » Medical Questions » Out of treatment ideas -- help

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Author Topic: Out of treatment ideas -- help
CD57
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What can be preventing treatment from working? I am out of ideas.

I have done: abx (orals and now re-trying some IVS), herbs, supplements, ozone, HBOT, IVIG, meditation, neural therapy, light exercise, silver, charged vibrational water, Rife...it's been 6 years now. The only thing I haven't done is stem cells!

I have MTHFR AC1298c but so do a lot of people. I have the inability to detox mold genes, and some of the elevated markers that Shoemaker describes. I have always been dubious about the mold thing as I have NO respiratory symptoms at all and no one in my home is sick.

I have herxed in the way that people talk about here exactly ONCE, my first few months of doxy. I feel like my immune system is not doing anything to fight these bugs. I don't get colds or flus. I can swallow whole bottles of something like Cumanda with no effect. The meds that used to provoke a reaction (but not improvement) don't anymore. I notice nothing around menstruation out of the ordinary, and my symptoms show up the same time each day.

My symptoms are the same as they have been since the beginning of treatment -- they worsened and stayed worse. No wait, there have been improvements like belching, heartburn, BACK PAIN are mostly gone. For that I am thankful. I can't believe I used to live in that much pain and think it was normal. But now I have other symptoms in their place.

I dabbled in salt/C....nothing. Did 3-4 weeks of malarone + Alinia = nothing. My symptoms are neurological, cognitive, and mood, with some tachycardia, and read like a laundry list of bart and Lyme.

The crawling scalp and teeth neuropathy (and my scalp muscles MOVE at night, I can hear them against the pillow!)

I just started the Buhner protocol (new) to bring down cytokines at the very least (this is not a killing protocol) and boost immune system. The rhodiola and eleuthero do something, but I notice nothing with the rest.

Usually with people who don't respond to treatment you see steroid use -- I have never taken one. And even then, they seem to get better.

Oddly Klonopin seems to make me feel almost normal....I am tempted to just go on it and say what the hell.....but I know that it will eventually stop working like everything else and I'll be stuck on it.

Viruses? Yeast? parasites? I can't stop trying because I have family members depending on me, but the hopelessness and depression are back full force and I don't know if I can go on. NOTHING WORKS.

At the heart of all of this is a faulty immune system, because as my LLMD likes to say, these bugs aren't that scary as most people are walking around with them. Certainly that is the case with bartonella mycoplasma, and probably Lyme. So it's an immune system issue. How do I get it to "see" these bug and start fighting them? I can almost pinpoint when that stopped happening.

I am out of ideas, but would love to hear yours. I've worked very hard, and don't give up easily, but I'm lost here.

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birdie67
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Have you checked your methylation pathways and treated them? Something I'm working on now and you wouldn't believe the herx I'm having from it.

I've never really herxed from orals or IV's either.

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seibertneurolyme
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I don't think you have treated enough to say that babesia is not part of the picture.

In this situation my first thought would be to do a blood smear from either Fry or Clongen to see what actually shows up. If you have bart it should show up -- Fry would probably call it haemobartonella and Clongen would label it as rod shaped gram negative bacteria. But maybe babs would show up or something else unusual.

Was the colloidal silver IV? -- just learned recently that docs are doing much much higher doses than hubby did -- either 3 or 6 times more -- I can't remember if we did it 1 or 2 times daily. I am not really sure I believe that it works as well as the hype, but don't know.

I have been doing some research on the immune system and babesia. It seems like many with lyme are stuck in Th1 immune pathways -- you will not get colds.

To clear babs you need to also have a Th2 immune system response. Not sure how to shift that -- do remember reading about some herbs that supposedly will do that but need to find that research again.

I think this is an area that too many docs ignore. Have you ever had CD4 or CD8 markers tested or IL - 10 etc?

Bea Seibert

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Robin123
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Just some guesses here -

For immune boosting:
LDN
Host Defense product with 17 mushrooms in it
Shiitake mushrooms
Omiboshi plums

For mood:
Pulsatilla 12x homeopathic remedy or see a good homeopath for remedy suggestions for you.

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Razzle
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We had mold growing in our house, and I had no respiratory issues.

The mold growing in our house contributed to severe nausea, and also to my hay fever/allergies (sneezing, runny/stuffy nose, itchy/watery eyes).

Cleaning up the mold and getting rid of the affected part of the wall enabled me to reduce my allergy medication, and also helped reduce nausea, ultimately enabling me to eat better.

Don't under-estimate mold...

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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Maya12
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The first things that come to mind for me are metals and parasites.

Have you ever checked your heavy metal status?

Metals and parasites can cause all kinds of neurological issues.
Did/ do you have amalgams? Ever exposed to lead paint/ pipes etc

If you are full of heavy metals then none of what you have taken would effect the movement of metals out but you would still be left with symptoms .

Just a thought

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Maya12
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And as razzle said, mold and also yeast too
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poppy
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I have heard some people say they didn't see a real difference until they treated everything at once. All the coinfections +lyme. Presumably this is because losing a few symptoms leaves others, then when switching to another bug, same thing. Never enough improvement for the patient to think they are getting somewhere.

I was treated for lyme and babs at the same time and think this helped. But never had bart, so don't know if that would change the picture.

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CD57
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A metals urine test showed I had metals, a KPU test showed I had that, and there are no reliabile tests for parasites as I understand it.

Could be right about treating everything at once to get a reaction.....what would be the best thing to add, malarone?

Oh I tried LDN, got an adverse reaction whereas most people feel better or feel nothing.

Maya I know you feel better after parasite treatment right?

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CD57
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Bea, just got cytokines tested so will be interested to see what that yields.

No one will do silver out here where I live right now, climate is too scary/tight. I did oral spray per my LLMD, I don't think it does anything as it is destroyed by the stomach acid. It would need to be IV for sure.

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anuta
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At this point, I would probably invest in GOOD ART practitioner or try to learn to test yourself.

You have to see what are your outstanding problems are. Abx didn't work for me either. I did 2.5 years and decided to go alternative way.

I have learned how to test myself with Biotensor and found out that 2.5 years of abx didn't eradicate ANY of co-infections. I mean NONE. I felt better and many symptoms were gone, but being able to do energetic tests, I was able to see that all co-infections were still active.

So after 2.5 years of treatment I started all from scratch. 1 year later doing photons, anti parasite treatment, fixing KPU, addressing emotional issues with MFT and eliminating most of the pathogens I'm very close to remission.

There is no way that would be able to do it without energetic tests!

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Catgirl
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Sounds like a detox issue. And not herxing is also a mold issue. Everyone gave great advice here. I think Anuta is spot on. You need a good ART practitioner. Also, ondamed. http://www.ondamed.net/home.html

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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CD57
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Why does it sound like a detox issue?
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Porsche
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It would help if you give more details about all your symptoms. For instance:

Do you still have sweats at night, or anytime.

Do you twitch a lot?

Can you sleep well without meds?

Can you exercise easily without fatigue?

Does your whole body shake and interrupt your falling to sleep?

Do you have memory problems?

Are you sensitive to computers or other electrical devices that emit EMF?

Ect, ect....

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Keebler
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-
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.
-

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Keebler
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-
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117755;p=0

Topic: RIFE Machine - Reference LINKS

LL Naturopathic links here, too.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
-

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Keebler
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-
For IMMUNE MODULATION

http://www.amazon.com/Promise-Dose-Naltrexone-Therapy-ebook/dp/B002MUAEOS

The Promise of Low Dose Naltrexone Therapy: Potential Benefits in Cancer, Autoimmune, Neurological and Infectious Disorders

- by Elaine A. Moore & Samantha Wilkinson

Website: http://www.lowdosenaltrexone.org/
-

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ktkdommer
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I spoke with a gal on Sunday who seriously got well from Lyme doing stem cells and other modalities in Mexico. Called them and spoke with a doctor. Got their pamphlet/booklet today. Not sure what to do.

I hear your frustration. I'm sorry this is such a hard, hard road!

--------------------
Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome.

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Catgirl
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Have you done a methyl panel yet?

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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GretaM
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CD57-have you had your immune function tested?

(not sure what methods there are, but I'm thinking along the lines of a vaccine titer challenge)

Just throwing out some ideas... [Smile]

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CD57
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Oh forgot to add, I'm on IVIG for borderline-low IGG subclasses.

At appt today doc wants me to do long term high dose Vit C via IV, and GcMAF. Continue abx and herbs to bring down inflammation.

Porsche, here are the answers:

Do you still have sweats at night, or anytime. NEVER HAD

Do you twitch a lot? YES

Can you sleep well without meds? NO

Can you exercise easily without fatigue? YES

Does your whole body shake and interrupt your falling to sleep? SOMETIMES/RARELY

Do you have memory problems? YUP

Are you sensitive to computers or other electrical devices that emit EMF? DON"T KNOW

Ect, ect....

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CD57
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I have to ask for more advice. I am SO SICK and really feel like I am out of options. I have no cycling symptoms, just feel sick every day, at a certain time, for hours. I've taken some months off meds and just done Buhner, and during that time RESTLESS LEGS and a severe RAW NERVE SCREAMING sensation showed up. The crawling scalp neuropathy got worse, and my scalp muscles and teeth move at night. This kicks in at 11pm along with tachycardia/arrythmia. I have huge swollen tender lymph nodes, day in, day out, sore throat, mouth sores, sore tongue, painful ribs, terrible insomnia, depersonalization, and cognitive problems. Oh, headaches on top of head, base of skull, behind eyes. My feet hurt, and my back.

Bart meds do nothing, Lyme meds do nothing. Ivermectin did nothing. Pulsed Mepron and ZIth did nothing. I am on IN INVANZ with ketek and now pulsing Tindamax. I am on full Buhner protocol for mycoplasma and bartonella, at the very least trying to bring down inflammation. I'm pretty sure the high dose arginine made my viruses flare terribly.

I need help from the old timers! Bea, Boxermom, Faithful, what to do??? I have been told I can't get well because I have no glutathione, because I've been floxed, because I have MTHFR detox compromised pathways. I am trying to work on those issues by taking NAC and other precursors. B vitamins.

I can't take this anymore. I went to a funeral the other day and was like, I want to go too. I am crying all the time.

My LLMD seems to have checked out. The naturopath in that office wants me to do high dose IV Vit C and GcMAf. I think I am going to die, and don't really care.

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jupiter76
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Did you use Lovenox/clexane injections together with antibiotic therapy? This gave me good improvement.
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RC1
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In one word, MOLD. Once a person gets Lyme, Mono, or other serious infection, if that person is mold succeptable, their HLA can get broken (HLA gives your body the ability to detox mold or Lyme toxins).

You really should do an ERMI test on your house. I used EMSL laboratories, they are the cheapest, it's about 150.00.

I'm doing quite well these days, but if I get a good mold hit, I can be sick for days from it. It can happen from just eating at a restaurant that is moldy. When I first walk in, I evaluate...smell, water damage? Most of the time there is no evidence [Frown]

Dr. S (the mold doc) believes there is no Chronic Lyme, just a whole bunch of people with their HLA's broken from Lyme. I don't really buy that, but I do think it's a major factor for a lot of
people.

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glm1111
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YOU HAVE CRAWLING UNDER YOUR SCALP!!!! This is clearly a PARASITE infestation. Don't understand with all of the posting about parasites why you have not gone after them with either pharma antiparasitics or antiparasitic herbs and salt/c. Consider that you might have this infection www.lymephotos.com As well as other parasites such as roundworms.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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BoxerMom
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CD57 - If we moved in together nobody would be able to tell us apart. I have the exact same symptoms. To a T. I am also entertaining fantasies of my own death.

You know what I'm going to say. Babesia. I know you don't think it's your pathogen, but you've named all of my symptoms.

Bear with me here:

I've been chasing this bug for years. Mostly with Mepron/Malarone. I've improved steadily, and had some really great days, even weeks, but if I back off of treatment, I relapse. Quickly.

And if I change up treatment, I herx. Quickly. Then I wonder if I'm flaring or maybe this isn't Babesia after all.

Pulsing Mepron/Zith won't get you anywhere. I took them steadily, at increasing doses, for a year. It was the worst year of my life, and life has not been super great, so that is saying a lot.

Pain in all the places you describe, sore throat, weird nerve sensations, wretched insomnia, crying, depersonalization, thinking I'd be better off dead. All of it. I don't know how I survived.

I also had no pattern. Just sick all the time. At some point it became worse at certain times of day, but mostly just sick all the time.

Well, guess what? It's all back. I've been posting about adding Liposomal Art, regular Art, Cryptolepsis, Colloidal Silver and A-Bab to my already heavy protocol.

I'm back to year one all over again. I am herx central and it is abject misery. I cannot believe my pathogen load is still this high. I have probably been just holding it back for a couple years.

This bug is tenacious. And there is some point at which the population tips the scales, and what were tolerable symptoms become intolerable and downright terrifying. You can feel like you are dying.

Then there's the cognitive aspect of Babesia which manifests as thinking you don't have Babesia. It is the most brilliant microbial survival adaptation I have ever seen.

I get hate posts when I mention this aspect of Babesia. I'm not insulting anyone's intelligence. This D@MN BUG completely messes with higher reasoning and decision-making. And the emotional symptoms scare the CR@P out of people!

I second guess myself all the time. I can barely plow forward against this thing.

I think you are herxing your face off. Invanz is an interesting med to me. I've watched Dr. J in DC prescribe meds in this class for Babs and maybe cysts. It hits hard! Ketek will have some Babs' action. Tini definitely has Babs' action.

And, of course, these meds hit other microbes, too.

You are getting whacked.

I think you should detox the CR@P out of yourself and stay the course.

I won't keep hounding you about Babesia. I stay off of lots of Babesia threads because I sound like a broken record. I'm not trying to be annoying. I've been up close and personal with this bug for over 20 years. I know its habits.

And I care. I hate watching people suffer with this illness. It breaks my heart in a million directions.

I wish we lived closer. I'm sorry you're going through this.

We could use an entire forum for Babesia support. It is that awful.

I hope you'll continue. I think you're on a good program.

This totally $UCKS!!!

(Later I will email you the story of my hot tub social disaster. Don't go hot tubbing when you are treating Babesia! Just don't!!)

--------------------
 - Must...find...BRAIN!!!

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CD57
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Boxermom, I thought you were so much better!! This really breaks my heart, you were doing well with progressive herxing and feeling better. WTF??

You don't sound like a broken record. It's just been tough bc my LLMD doesn't think it's babesia and doesn't want to treat it! The only positive tests I have are for bart, Lyme, myco and viruses, and some mystery protozoa that shows protozoa holed up with coccobaccili. He says all of my symptoms are bart, and the bart people say all my symptoms are bart! I also did 3 weeks of Alinia and malarone and got NO HITS. I don't get it! Six months of once a week Ivermectin, moved up to every 3 days...NO HITS!
I can't tell if anything is happening because I feel like crap, all day, every day, and night too.

I don't even know if I could make it through treatment such as yours.

Do my symptoms really sound like only babesia, with the telltale sore feet and everything, that came out ON TREATMENT and never left?! And the swollen lymph nodes with insomnia, terrifying depression etc?

I don't even know if I've ever HERXED like you have....that implies die-off with subsequent improvement right?

I developed all those symptoms OFF MEDS and when I go back on I am a little better. That tells me this treatment isn't even killing anything. !!!

Gael....I did Salt/C for a bit, the Alinia and malarone thing, cryptolepsis, etc but have not tried hard core parasite cleanses or anything. I know you treated for a long time with IVIG and abx and got nowhere either.

I just need a clear HERX with IMPROVEMENT and then I'll know on the right track. In the meantime, yes, I continue to contemplate death, I know just what you mean Boxer! I wish we lived closer too. My heart breaks for all of us in this hideous position that just keeps going on and on....

I do appreciate people weighing in.

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CD57
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OMG "
Then there's the cognitive aspect of Babesia which manifests as thinking you don't have Babesia. It is the most brilliant microbial survival adaptation I have ever seen."

IS THIS TRUE?! this is a craaaazy disease!

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lax mom
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CD57: You stated that Klonopin makes you feel almost normal.

If you feel so horrible that you wouldn't care if you died, then why not just take the Klonopin and give your CNS some relief???

Seriously.

For whatever reason, Klonopin helps me have energy and takes away some of the horrific neuro symptoms. I don't understand why you are continuing to stay in sheer misery when you are prescribed a medicine that you know helps you.

(I hope I don't get flogged by recommending a benzo, but you are having suicidal ideation...give yourself some breathing room and put on your lifejacket).

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
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Ellen101
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What about food allergy and sensitivity testing? I was amazed when I saw all the foods I am allergic to and had been consuming them every day.

As far as LDN goes alot of times you will feel worse at first. I have had to stop and restart it 3 times due to pain increase. Now on my 3rd time I'm noticing a big reduction in my symptoms. It takes awhile for your body to get used to it and you need to build up the dose slowly.

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surprise
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Well, if you are wanting random input, I'll go.

I am also in CA, and have been treated by 2 LLMD's,
we all think I don't have babesia.
I also went on babesia meds, and felt nothing.
Don't have the symptoms. And I do herx from my other infections.

You say you don't herx, but it sounds like you are herxing now:
Feeling like garbage, insomnia, etc. Tindamax is hard core, and hits parasites, full moon currently building.

I know a bit about A1298c,
don't think it's a severe mutation. Clearing ammonia may be more difficult with it.

I did the HLA mold testing, both daughter and I have 1 gene of the 'dreaded'
Went through the whole detox deal: Eh. It was not a lightbulb fix for us.
Was treating Lyme hard at the time, tho, too.

Had our house ERMI tested, had mold inspector come out- small area in garage- fixed- other than that, fine, tons of $$ spent.

I'm a Bart person, it does sound like Bart. And parasites. I'm sorry, it is depressing, I agree. Bart entrenched is hard for me to fully clear.

Another thing: I think one time you said you had high Myco P.
I can tell you in the children, this infection is causing major issues.

And, even tho you've been on antibiotics to clear it, your titers and infection may remain high with this, if you have another carrier in the house giving it back.

I'd stay on the Klonopin, too.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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Haley
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Did the PEMF ever help? If so, are you still doing what you did before?

I personally believe that once the crawling scalp is gone for me, I will be well. It correlates with all of my brain stuff.

I use the probe at high frequencies at the crown of my head several times a day. I truly believe it is starting to work again.

I thought that my body had adapted to the frequencies, but actually I had backed off on it for a while.

Hit the Scalp hard and frequently at high frequencies and see what happens.

Sending you love and healing thoughts CD57.

I keep going so that I can one day help someone that feels like giving up... but have had many times I felt the way you do.

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CD57
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You're right about the klonopin. I have resisted because I know it's a bandaid and not getting at the real problem. I have feared the resistance issue, having to take more, it not working, and still being hooked on it. That should be the least of my problems right?

Parasites? Have you had improvement with that treatment Surprise? I know you are doing much better.

I am taking isatis root for the myco, and have taken boatloads of doxy which I thought was treatment for myco. What else is to be done?

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BoxerMom
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Herxing doesn't always come with improvement when your pathogen load is high. Sometimes you just feel like worse cr@p.

I second (or third) the Klonopin. You don't have to suffer. The benzos are weirdly counterintuitive in our population. Many of us feel tons better. You can wean off later. I've done it with no problems.

I also have the Myco P and Chlam P and every stupid virus on the planet. My titers NEVER go down. Frustrating.

I think you should manage symptoms and stay the course. I agree that this exacerbation is herxing.

For me, a flare is fevers, maybe sweats, fatigue, feeling blah.

A strong herx is "please kill me now."

Don't even stress your brain about what you are killing. You are killing something important.

As for me, I am finally having a better day today. I took one full day off meds, detoxed, took some brain supps, and now I'm ramping back up.

My treatment plans would floor a gorilla. Sometimes I overdo it in my quest for remission.

Note to self: Marathon, BoxerMom, not gorilla sprint.

--------------------
 - Must...find...BRAIN!!!

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Catgirl
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quote:
Originally posted by CD57:
I'm pretty sure the high dose arginine made my viruses flare terribly.

What about protomyxzoa (proto)? Arginine makes protomyxzoa worse. It would explain why your bart treatment doesn't work. Proto makes tons of biofilm to protect all the bugs. The symptoms are different for everyone and easily confused with babs, however insomnia is a classic symptom for this bug.

You can test yourself by eating very low fat and no meat (has arginine), no eggs, no nuts, nothing with arginine. I believe I have this bug, but I can still eat some meat (no beef though). I had to find the tipping point (balance).

[ 07-18-2013, 10:11 PM: Message edited by: Catgirl ]

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Catgirl
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BoxerMom, I love your posts (don't stop).

I have tons of co infections too. I think proto is the problem. If you don't reduce the biofilm maker (proto), then you can't hit the co infections. Proto makes 100x more biofilm. The Dr. F interview is within the context of the first link below.

http://protomyxzoa.org/

http://www.betterhealthguy.com/dr-stephen-fry-on-fl1953

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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surprise
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I have been alarmed at my parasite infection load, such a clean tidy gal like me (embarrassed) but really, still floors me.

Gael is right, horrific things reproduce. I have had improvements, yes, from all the antibiotic treatments, and general clearing of

all the toxins in the soup mess parasites and biofilms hang out in. I visually see it leave my body. I look. Since I'll never be rich and famous,

who cares if I share it. After being off all antibx, Bart symptoms started coming back- anxiety, irritability, stomach attacks (Bart, yeast, parasites) no sleep.

So also went on Buhners new treatment- hard- herxing- and surprise, borrelia felt like it woke up -

So I added full cats claw, etc. also feel like garbage, and got depressed over this mess.
And, I've been feeling worse every 4 days or so leading up to full moon-
Last month super moon I did a parasite protocol

Hilda Clark tincture, yikes, herx and results.

I don't own any pets. Everyone loves to ask me why.
I am dying one day to say:
If you treated/ had parasites like I do, you'd not want them either.

I'd clear the room. Maybe it's actual spirochetes in the toilet.
How come we are always thinking of co-infections? Hmmm.
No-one seems to talk about actual unrelenting Borrelia.

Hang in there. We care. We understand. Right Boxer Mom, marathon, not sprint.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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CD57
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I don't know if I have the mystery bug but I do have a protozoa on the slide. Didn't know ARGININE made that one grow, too? I sort of stopped paying attention to the Fry thing when some publication or opinion came out that (Lyme MD?) that it may be a beneficial bug that we are born with, or that we acquire, that is symbiotic.

Plus it is hard since my LLMD doesnt believe in it....but he did say that "bart" is being helped by Ivermectin. I didn't feel much on Ivermectin at all. No herxing, no improvement. However I took it once week or every 3 days at most.

How interesting about the parasites Surprise. And I love your posts too Boxermom.

Catgirl, aren't you another doing much better from parasite cleansing?

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Catgirl
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Yes, I am much better than I was a year ago (treating parasites and heavy metals has helped). I am eating lower fat than I was a year ago too though. I used to eat a cup of nuts a day, along with the rest of my food. Now just a couple of nuts.

But I still have many co infections. I think I was in denial about proto for a while (negative test), even though I felt much better on a low fat diet. I think it's easy to fall into denial with this bug. I did it with lyme too (denial). I slacked here and there on my diet, and here I am.

It's weird because I re read your posts tonight trying to help, and it just stood out. It explains why my co infections aren't going away. Now I know I need to focus on it again.

Proto is not beneficial, IMO. If your LLMD doesn't believe in it (unfortunate), your PCP can order the test for you, and you can send the order to Fry labs. They will tell you what to do at Fry Labs. This bug explains your issues, IMO. Whatever you take for any TBI won't fully hit what you're trying to kill until you change your diet. I just bumped up an old thread on the board (Is low fat diet the answer, Dr. F thinks so). It has lots of info on it.

You can test yourself with diet. I tested negative on the blood test, but tests are just tests. Once I changed my diet, I felt better. The more fat I cut, the better I felt.

[ 07-19-2013, 01:17 PM: Message edited by: Catgirl ]

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Catgirl
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quote:
Originally posted by CD57:
Plus it is hard since my LLMD doesnt believe in it....but he did say that "bart" is being helped by Ivermectin. I didn't feel much on Ivermectin at all.

Ivermectin hits proto, so perhaps taking the iver helped some portion of your bart meds to get through.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Haley
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Have you tried Albenza or other antiparasitics?
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surprise
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I am still confused by my Fry Protomyxzoa test- I guess there are 2 levels,

I did the least expensive one, it came back low positive for biofilm- showed a color picture of a little biofilm, and on the test itself,

just says 'low positive biofilm'

I know this is not popular, but, I'm not sure about protomyxzoa - I think for me, it's just part of my parasite picture, and yes on the biofilm,

which I've treated and still do now (back on with Natto with the herbs)

My LLMD told me not to go low fat- I feel better with some fat, GF, low yeast- thin, but lifting weights.

I did Ivermectin, I felt it cleared some parasites, but not a wow drug for me at all.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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surprise
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Just wanted to add: certainly all our cases are not the same.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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BoxerMom
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surprise - totally on board with everyone being different.

I have been "Babesia forward" during most of my treatment, meaning Babs is my most prominent and difficult infection.

Others are Bart forward or Lyme forward or parasites forward or mold forward or whatever.

And we will ALL have overlapping symptoms. We are a confounding bunch, even to ourselves.

I think this is a great thread, with lots of members weighing in on what they know best.

Lots of treatment is trial and error. All we can do is share and support and keep moving forward.

--------------------
 - Must...find...BRAIN!!!

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BoxerMom
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I think I am gorilla forward. HA!

--------------------
 - Must...find...BRAIN!!!

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surprise
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Confounding, indeed! I am for sure Bart forward; and feel like a hissy, nocturnal cat right 'bout now, 3 a.m.

Godspeed, everyone.

[ 07-19-2013, 08:25 AM: Message edited by: surprise ]

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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GretaM
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Ha! Gorilla forward! [Smile]

I sweated so much last night my hair is still damp and I've been awake for 5 hours already.

I saw my LLND yesterday, and my primarily lyme treatment has just had crypto added for babesia. Still treating for c.diff as well.

I think the term is homostasis (used to know definitions-now I barely know where I live anymore)- Before treatment, every filthy bug and parasite was happily in balance.
Enter abx and the balance shifts...

After lyme treatment for a bit, the balance changed and babesia gained some ground, as did pinworms.

Ideally, there would be a pill that would kill every pathogen at the same time... So the bugs couldn't keep shifting power... I feel like I'm fighting WW3 here with all these darn things.

I can't remember where I was going with this, but my point was to offer support to CD57.

Let's fight this war against these darn things-and keep rolling with the punches.

Oh yes, my point-I remember now...maybe the balance keeps shifting, CD57, and different bugs come to the front as another bug gets the abx.

The pinworms were a surprise for me. Unpleasant surprise. Yuck!

Sorry for the rambling everyone.
This week of my other abx has affected thought processes big time.

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hadlyme
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If you're out of treatment options, why not try a lower fat way of eating. You might herx on it at first, so just be aware of that feeling.

No oils, nuts, anything high in fat. Whole foods, and you can do some meat if you need. Just stay away from processed food and make sure more whole foods. Salads, meat baked, veggies, fruits.. stay away from a lot of dairy products. Arginine isn't as big of a deal as it was a few years ago with Dr.F. It was to do a good ratio of lysine to arginine.
Do it for two months and see if you herx and then feel better. It's a pretty cheap and easy way to test it out.

--------------------
Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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CD57
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You're right, the low fat thing would be easy to try. I'll have a hard time staying away from the avocado. I'll give it a try.

My Fry slide said "few biofilm colonies observed with protozoa (unidentified) and coccobaccilli adherent to erythrocytes". it was not IDd as FL1953 bc I did not pay for the additional testing to do that.

The one before that, when I was on bart abx, showed...I don't remember what, but not the coccobaccilli. I think there was a protozoa and biofilm.

I have done the Galaxy test several times for bart, and two times it was positive and once negative (the last one was positive AFTER bart treatment!))

They said they can't be sure that bart is making me ill though. THe doc said he thinks it actually is NOT what is making me ill (this is my previous doc). Even though it is "bart"symptoms.

No one has even discussed babesia, although my current doc would probably let me do Coartem. I'm on herbs like cryptolepis and alchornea, can't tell anything there.

I'm just looking for a clear herx, and subsequent improvement, and I know then I'll be on the right track. Right? Maybe?

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CD57
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I have not tried Albendazole or the Dr K parasite protocol, except I did take Alinia for several weeks. Other than hideous stomach pains I did not feel much.

Maybe I'l try the Hulda Clark parasite cleanse, is that a good one?

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mlg
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Parasites, proto, and detox.
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glm1111
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I would try Parastroy to begin with and also the salt/c protocol. I also add extra cloves IHanna kroeger) Stomach pains and gas etc are all symptoms of dieoff when on antiparasitics.

Check the symptom list at Humaworm and you will get a good idea of what the symptoms are. Warm water enemas are also a good idea to release dead and dying toxins.

You can increase the Parastroy to 3 each 2 x a day after the 3rd week. You can also try the Hulda Clark cleanse and alternate with others as well. I also added Super Digestaway Enzymes by Soloray which are also antiparasitic. You have to STAY on antiparasitics to see results.

It might also be a good idea to order the salt/c plus book from Amazon. The combo of the herbs and salt/c can add quite a punch when attacking these critters. Hope you give these things a try.

Gael

[ 07-20-2013, 08:41 AM: Message edited by: glm1111 ]

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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Catgirl
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http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/118389?

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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GretaM
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I had best results with the Hanna Kroeger Wormwood Kit.
And Parastroy is a good one as well.

Hulda Clark and Hanna Kroeger are the same, except Hulda Clark recommends the addition of l-arginine and L'ornithine for ammonia removal. Ascorbic acid shaken on food to fight mould and fungi, and removal of heavy metals and reducing chemical toxicity by using natural-ish/simple cleaning products.

I did not get results with humaworm or parasite cleanse by renew life.

Salt and c is helping, and I just took combantrin two days ago, and already am feeling better.

Just my experiences with what I've tried.

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CD57
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GretaM, what is combantrin?

I did salt/c for about a month, nothing much happened. Didn't get to 10grams or each though, more like 3 grams of each. But again, seems like there should have been something.

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GretaM
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Combantrin is a dewormer.

Pinworms, roundworms, and other disgusting creatures. yuck.

I definitely have pinworms, I won't go into the gross details.

Roundworms, pretty good chance, because I saw them, or what looks to be worms in the toilet when I was taking my lyme essential oil and doing the salt c

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mlg
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I would treat with Ivermectin, Mebendazole, Albendazole, anti-parasitic herbs.

And do enemas and colonics.
My LLMD is now working hand in hand with Dr.F (proto). I have his symptoms list and guidelines in hard copy I will have to type it up for lyme net,hopefully this week. Dr. F and Dr. K now say you have to treat worms like crazy first and detox through enemas or colonics. Then you start treating proto.

I told my LLMD, I feel like something is choking my blood. She said, word for word that he said the same thing. It chokes the blood supply circulation and allows the primary infection to proliferate. I believe it is now known to be worms. That is why Dr. F. and Dr. K say attack worms like crazy.
I also did some supported things like juicing especially greens, PEMF, IR sauna.

I had to get 3 different docs to make some improvements.
LLMD
Alternative (took classes with Dr K)
lyme literate psychiatrist/neuralogist) helps sleep, etc.

My alternative doctor (who is also a certified medical doctor) told me that the famous mold Doctor is extremely sick right now with this thing that is making us all sick. I don't think mold is the problem. I think it's doing anti-parasitics and somehow boosting our immune system.

Whenever you feel the need to take Klonopin take it. It is a tool that we can use to mitigate our symptoms while we try to get to the infection and our immune system up.

When I was first sick I had horrible thyroid problems, high BP, extremely low glucose. MY LLMD said that those problems would get under control once we had more control of my infection and all those symptoms have resolved.

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CD57
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Mig....whaaat? I'm in CA too, do we have the same doc? My CA doc said he didn't really believe in the proto although he had seen some success with Ivermectin.

Would really like to see this symptom list etc. I too feel like something is choking my blood, but more than that, that something is going to where all the small vessels are and wreaking havoc, "small vessel disease". Worms???

I'm going to PM you to see who these practitioners are if that's ok, since we are both in CA.

Who is the "famous mold doctor", Dr S? Is possibly sick with worms?

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