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» LymeNet Flash » Questions and Discussion » Medical Questions » Major setback - protomyxzoa?

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Author Topic: Major setback - protomyxzoa?
biscotta
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I am having a major setback in my recovery. I have been on antibiotics since September 2011. I was 90% of the way better when severe fatigue returned. It was accompanied by brainfog, anxiety/panic attacks, and neurally mediated hypotension (where my brain isnt getting enough blood flow and Im near fainting, but never actually faint). I have had difficulty sleeping through the night throughout my illness. I get really hot when I sleep. I had maybe 4-5 months of sleeping well early in 2012 but it didnt last.

My symptoms have been severe enough for the past month that I am unable to do 75% of my work. Its grad school so its a little flexible but if I was in the real world Id be forced to do FMLA. There was one week where I was so bad that I was worried I wouldnt be able to prepare food. There has been gradual improvement over the past month but not to the point where I can be on my feet for more than 10-15 minutes. If I sit all the time, I don't feel too bad.

My LLMD had attributed the difficulty sleeping and anxiety to babesia. He gave me one course of Mepron soon after I began treatment, and another course in July. When I saw him last, these problems had just returned, and he put me on heparin for babesia. Now Im reading on this forum that insomnia suggests protomyxzoa, not babesia.

I spoke to my LLMDs nurse and she says they have run through all the kinds of treatments that they use, and that I should consider seeing someone else. I would like to see Dr. H in NY but Im sure his wait list is insane. I left them a message and havent heard back yet. My current LLMDs nurse suggested that I see someone else in the meantime, while I wait to get in to see Dr. H.

Any suggestions? I dont get the feeling that my current LLMD will be willing to prescribe stuff based on I read on an Internet forum... It seems like he is comfortable with a couple of treatments and not much else. If I am choosing an interim LLMD, should I be looking for someone who is willing to take my suggestions? Or someone familiar with protomyxzoa? I worry that anyone with a short wait list will be similar to my current LLMD.

In case its relevant, Ive been on doxycycline and zithromax for most of my treatment, September 2011 November 2012. Also plaquenil when I wasnt on Mepron. We switched to Biaxin XL and Omnicef in November 2012. I was on that until about a month ago, when I started the heparin, and he switched me back to doxy and zith. I did Artemesia from the Sept 2011-July 2012 or so. Ive been doing artemisinin for the past month. Plus vitamins, minerals, thyroid T3, fish oil, probiotics.

Thanks so much for reading.

Posts: 25 | From PA | Registered: Sep 2011  |  IP: Logged | Report this post to a Moderator
rera2528
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PM sent.
Posts: 447 | From Vermont | Registered: Jan 2011  |  IP: Logged | Report this post to a Moderator
biscotta
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rera, I tried to reply, but your mailbox is full.
Posts: 25 | From PA | Registered: Sep 2011  |  IP: Logged | Report this post to a Moderator
didogs
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biscotta-so sorry you are feeling so sick. Just wondering-have you ever treated bartonella?
Posts: 238 | From new england | Registered: Feb 2013  |  IP: Logged | Report this post to a Moderator
Lymetoo
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I don't see any cyst busters there like flagyl or tindamax. Could be the missing link.

Also.. yeast will keep you WIDE AWAKE!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94380 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
RC1
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Babesia gave me insomnia. Lyme and Bartonella too. There is so much overlap with the symptoms it's really hard to be sure what is causing the problems.

If you think you might have the Fry bug, the only thing that works for that is the low fat diet, keep it under 20-30 grams a day. They say that you will herx from the diet alone.

If you herx, then you have your answer. Fat feeds the biofilm that protects those bugs, if you thin the biofilm the bugs are then vulnerable.

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glm1111
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biscotta,

PLEASE consider treating parasites/worms. It was the missing link for me and many others. Google parasite symptoms.

Anxiety is on the list. Filarial worms are often an unrecognized co-infection of Lyme and often overlooked even by the best LLMDs.

You might have to treat on your own with either antiparasitic herbs and or salt/c. Check out the PARASITE WARRIORS SUPPORT THREAD. I will bring it back up for you.

Gael

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

Posts: 6418 | From philadelphia pa | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
biscotta
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Thanks for the replies everyone!

Didogs:
No, I havent been treated for bartonella. Do you think the anxiety and insomnia suggest bart?

Lymetoo:
That is true. My LLMD had given me the impression that the doxy/zith/plaquenil combination would hit all the forms of borrelia but when I look at Burrascanos guidelines it doesnt mention any of those being effective against cysts. Thanks for pointing that out.

Also, how could I tell if I have yeast? Is that something youd treat by prescription (diflucan) or are there dietary changes as well? Im currently doing something resembling the Zone diet. Although honestly right now Im too sick to cook for myself so Im not eating as well as I should.

RC1:
Thanks for that advice, it would be nice to have a way to test out the protomyxzoa theory in the meantime.

Glm111:
Parasites is a pretty broad term. You mention filarial worms, are there other kinds of parasites to think about? The little bit of googling Ive done says that filariasis is transmitted by mosquitoes. Do you think Ive been unlucky enough to contract something from a tick as well as a mosquito?

Did you say I might have to treat parasites on my own just because of my current LLMDs reticence? It looks like these can be treated with prescriptions. Do other LLMDs look at these parasites?

I'm checking out the parasite warriors thread, it's a long one!

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Lymetoo
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Anyone taking antibiotics long term either HAS or WILL HAVE candida.

You can test, but a trial run of Diflucan would sure tell you! Many Lyme patients stay on Nystatin daily to help PREVENT candida/yeast.

Candida Diet and Elimination:
http://flash.lymenet.org/ubb/Forum1/HTML/021412.html

Another Candida Diet list:
http://www.thecandidadiet.com/foodstoavoid.htm

Symptoms of Candida:
http://www.thecandidadiet.com/candidasymptoms.htm

I think the Zone diet allows a lot of carbohydrates, which may help grow yeast.

--------------------
--Lymetutu--
Opinions, not medical advice!

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surprise
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Personally, for me, anxiety and insomnia were absolutely Bartonella.

I did not have babesia.

I treated a low positive protomyxzoa test by treating biofilms and parasites.

I was not willing/couldn't do a low fat diet because of my low body weight, and my particular LLMD did not recommend low fat diet to treat protomyxzoa, anyway.

Yes, had a most definite yeast issue, also.

But Bartonella, to me personally, was anxiety and insomnia.

--------------------
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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beths
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Doing well, then getting worse does suggest another infection is rearing its ugly head, just as you knocked down your current one

I had major anxiety and insomnia when treating bart

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NH-Lymie13
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a blood thinner to treat Babs?? That sounds insane!! to me. I have Babs, Bart and Bb. Did the doxy for 6 months, then amox. Stopped that, got in to see a LLMD-Amox 1500mg 2x/day, Zithro 500 mg/day, Mepron 2x/day. I have never felt "better" since i first got 'sick' in early 2008. (never knew i got bit). Then he stopped the above after 6 mos, started bactrim & cefdinir (i have no ins). Has stopped those, and am back on the Amox, zithro, mepron and.... Flagyl. I dont want to take the flagyl.... all those spores spilling open the bacteria-makiing me sicker-and then the antibiotics trying to kill all of them-releasing toxins-making me even sicker, maybe hospital or dead. BTW these bacteria can stay in spore form for years and years... they dont just last a few days or a week. I've been in the medical field for 25+yrs, an EMT and medical transcriptionist. But i cannot work at all anymore. Bewteen the fatigue, lyme fog, cognitive changes, physical disabilities, and contant 24/7/365 pain, Im suprised i bother to wake up each morning......This disease sucks.
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NH-Lymie13
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p.s. take acidophyllus, at least 15-30 billion live cultures a day to fight the yeast... I take 15-25 cycling every day. At LEAST 2 hrs before or after your antibiotic, or it will affect the digestion of the antibiotic.
Posts: 2 | From NH | Registered: Apr 2013  |  IP: Logged | Report this post to a Moderator
faithful777
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quote:
Originally posted by NH-Lymie13:
a blood thinner to treat Babs?? That sounds insane!! to me. I have Babs, Bart and Bb. Did the doxy for 6 months, then amox. Stopped that, got in to see a LLMD-Amox 1500mg 2x/day, Zithro 500 mg/day, Mepron 2x/day. I have never felt "better" since i first got 'sick' in early 2008. (never knew i got bit). Then he stopped the above after 6 mos, started bactrim & cefdinir (i have no ins). Has stopped those, and am back on the Amox, zithro, mepron and.... Flagyl. I dont want to take the flagyl.... all those spores spilling open the bacteria-makiing me sicker-and then the antibiotics trying to kill all of them-releasing toxins-making me even sicker, maybe hospital or dead. BTW these bacteria can stay in spore form for years and years... they dont just last a few days or a week. I've been in the medical field for 25+yrs, an EMT and medical transcriptionist. But i cannot work at all anymore. Bewteen the fatigue, lyme fog, cognitive changes, physical disabilities, and contant 24/7/365 pain, Im suprised i bother to wake up each morning......This disease sucks.

Please break up your paragraphs to two or three sentences so that it is easier to read for everyone. Thanks!

--------------------
Faithful

Just sharing my experience, I am not a doctor.

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tick battler
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When symptoms decline like that, it is possible that you were reinfected. Mosquitos carry all of the coinfections, including worms. We have been reinfected by mosquitos many times. Did your backsliding occur when mosquitos were out? The other possibility is that a new infection is coming out as you have knocked down a different one.

It does sound like babesia to me. Once easy test is to purchase a bottle of Agrisept-L (GSE) and take a drop or two to see if you herx. That should tell you a lot if you do. In our experience, it kills both babesia and candida. You can ramp up slowly to 20 drops twice/day mixed in water or juice. We have cured babesia by taking that for 7 months.

tickbattler

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gmb
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Biscotta,

I am also having a tough past 3 to 4 week setback with similar increased fatigue, brain-fog, muscles sore/heavy, anxiety, and sleep disturbances. Peripheral neuorprophy also returned.

This all started when I stopped Mepron/Zith and slowly ramped up Cryptolepis and Sida Acuta. At that point I finally felt about 80% better after three years of agressive ABX treatment.

My LLMD thought that over a year on Mepron (double dose for last 7 months) I needed a change to finish off Babs.

I was still on IV (13 mo Rocephin, last 3 mo Doxy), TindaMax, and Bactrim DS, but last week stopped just the IV, pulled the PICC, and switch to oral Minocycline, with no more noticeable changes.

I take 1/2 tsp Salt/C twice a day, with a full compliment of VSL#3 DS and Floristor probitics, Milk Thistle, Garlic, Clove, Turmenic, Fish oil, Cats Claw, Vit B-6, B-12, and D-3. Also keep a good candiada and low fat diet, drink 16 oz lemon water and 32 oz plain water daily, and lost 40 lbs of bloat since starting ABX.

I did have a recent negative Candida test, and have none of the obvious thrush or skin rash sx. I have taken Diflucan in the past year as a precaution.

Liver enzymens have also been elevated thru this period, and are starting to declining back to normal range.

The only other time that liver enzymes were elevated was during a Rif/Zith/Doxy protocol about 1.5 yrs ago. So now I figure it has to be the Doxy that caused the AST/ALT elevation both times.

So... is this a backslide of Babs, FL1953, or (hopefully) herx from the new herbals, or Liver overload ??? I don't think I got re-infected.

I'll take tick battler's advise on GSE trial.
Anything else I may be missing?

NH Lymie... I feel your pain. I don't know how I managed to stay working for this long.

gmb

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annxyzz
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Just a thought ;
i would take a dose of ivermectin ( you can even get it at tractor supply ) and see how I responded . A big herx = babesia, parasites, or FL1953 .

Then I would order Argentyn 23 colloidal nano silver , and see if I get a herx . I have read it kills hundreds literally of pathogens - all varieties . If I had a herx , I would start low ( 1 tsp) and stick with it a long time .A lot of LLMDs are using it , esp when people can not take ABX . Burgdorfer , who discovered lyme said it killed lyme better than ABX .

Another thing you can do is address biofilm with enzymes. I had doubts about this til I bought some serra peptase , took 2 cAPSULES AND THOUGHT i HAD DESCENDED INTO sheol ( hell ) .

WITH ANY OF THESE START LOW AND SLOW, AS YOU MAY BE SHOCKED HOW POTENT THEY ARE .

--------------------
annxyzz

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gmb
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Tick battler,

I took 5 drops GSE last nite and again this am with my normal abx and suppliment regimin. No noticeable herx so far. I'll increase 2 drop per dose to get to your recommneded 20 drops twice a day.

Annxyzz,

Thanks for the suggestions. I had considered Ivermectin several moths ago, but my LLNP advised against it. So far I follow her orders 99% (I haven't yet discussed that I added Salt/C in January). I'll keep Colloidal Silver and serra peptase on my "to try" list.

I have heard that herbs are real potent and will ramp up slowly. I really hope my current sx are from the herbs, or a result of the elevated liver enzymes.

I continue to increase Cryptolepis and Sida Acuta currently at 50 drops 2x/day. My target dose is 1 tsp 3x/day. Think this is too much?

I just backed off Cat's Claw last week due to planned hernia surgery on 4/26. I'll scale back some of the other supplements for two week prior to operation based on pre-op review and instructions.

Yesterday was a bit better than the past three weeks. I'll check Liver enzymes again next week.

thanks

gmb

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