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Posted 3/23/2017 7:21 PM (GMT -5)
Hello All,

I was diagnosed last July (2016) by Dr. Stephen Fry with funneliformis mosseae. I found out on "betterhealthguy.com" that at the ILADS 2016: Lyme Disease - An Evolving Paradigm for Chronic Illness Conference, that "betterhealthguy" talked with Dr. Fry and Dr. Fry confirmed that Protomyxzoa rheumatica is now believed to be Funneliformis mosseae, "...which is more of a fungal organism." Dr. Fry prescribed doxycycline, which threw me into a HORRIBLE herx; I had to stop taking the drug. He then prescribed Zithromyacin, which I haven't started yet, due to excruciating teeth, gum, head, stomach, and neck pain. I can't start the Zithro until I have a final radiofrequency ablation on nerves in my face. I have been on a fat-free and vegan diet since July and supplementing with Vitamin C, D3, omega 3, probiotics, and more.
For those of you who have seen Dr. Fry and been on anti-biotics, what advice can you give me?????
HELP!!!!!!

Posted 3/23/2017 8:15 PM (GMT -5)
Hi Lena, welcome to our community.

I have not seen Dr. Fry, nor have I been diagnosed with the FL 1953 illness.

What is involved with the radio frequency ablation for your facial nerves?

What I do suggest is you start developing a good herxing regimen a.s.a.p. Start with a few methods and gradually build up by adding in a new one every 4-5 days.

Have you been diagnosed with any of the other co-infections -- bartonella...or babesia..?

Since you are new here, it would be helpful for you to look through the thread at the top of the page titled: "New to Lyme?..Start Here!" It's packed full of useful information.
Posted 3/24/2017 1:35 AM (GMT -5)

Lena said...
Hello All,

... Dr. Fry confirmed that Protomyxzoa rheumatica is now believed to be Funneliformis mosseae, "...which is more of a fungal organism." I can't start the Zithro until I have a final radiofrequency ablation on nerves in my face.

Hi Lena, Welcome to the group. I want to thank you for your update on PR actually being Funneliformis. But I thought this fungus only affected plants?

Do you get the painless hard nodules under your skin? Mine appear on the forearms and last for weeks.

Is the recommendation Fluconazole, Itraconazole, or other?

Do you know that nerves grow back after RFA surgery between 6-24 months and you will likely have to repeat this? This is why I elected not to have it done on my back.

I am a little miffed that I had to find out on my own that P. Acnes was the likely culprit in my back and there is a cure I wasn't told about.

I was going to forward the info to my former pain doctor but he is a surgeon and an oxycontin dealer so I don't believe he would do anything that would disrupt his profitable pain clinic. Especially since the treatment is going on four years since its discovery and it wasn't offered to me, but RFA was.

Have you tried Gabapentin for the facial nerve issues? It would take up to 2 weeks to see if it works.
Posted 3/24/2017 6:45 AM (GMT -5)
Leah- pain in -teeth-gums-head and neck. It probably worth getting checked by a biological dds-they can be the missing key to your health.
Posted 3/24/2017 8:27 AM (GMT -5)
Hi Lena,
Welcome to our community! I'm so glad you found us.

I don't have any experience with Dr. Fry or with Protomyxzoa Rheumatica, but did want to welcome you and suggest that you get Dr. William Rawls book "Unlocking Lyme". It's a very good book that has some really good information in it that still may be of help to you.

I do know that Dr. Fry isn't big on diagnosing Lyme, so I would encourage you to keep your mind open about that.
Posted 3/24/2017 12:21 PM (GMT -5)
Hi Lena! I actually see Dr Fry (but he is not currently guiding my treatments), he is the one who first put me on the right path in regards to chronic infections being at the root of my issues. I think he was overly focused on PR and some of these other organisms, I'm not sure how much they particularly drive disease as compared to lyme/bartonella (which I do have but which he kind of overlooked). I like him a lot though. No doctor is perfect. I think he is correct in a lot of basic concepts and he is the one who started me on antimicrobials and actually helped me (this was after seeing a ton of doctors, many very excellent, but clueless when it came to my case).

Herxing has always been a huge problem for me. First drug he put me on was azithromycin, and I remember I had to start that super carefully. Like one pill every other day or something. I still herxed a lot but was eventually able to build up to full dose. I think figuring out ways to detox that can help you are a good idea, plus easing very carefully into the antimicrobials, you don't have to do full dose right away, especially if you have strong reactions.

You might want to explore herbal antimicrobials, and then you could explore abx later? or just start abx but figure out a way to ease into therapy by starting with small doses and not dosing every day. There are a lot of good herbal antimicrobials out there like cryptolepis, Cowden protocol, and many others. What's nice with the tinctures is you can ease nice and easy into it and really control the dosing, like 1 drop and then build up from there.

Wishing you the best!
Posted 3/24/2017 5:53 PM (GMT -5)
Thank you everyone for your helpful comments and suggestions! I'm very glad I found this Forum! ChickenArise, you are correct that funneliformis is for plants, which makes me question the diagnosis I received. Fry said that I didn't have Lyme and evidently don't have Babesia, or anything else. But I have sick (came on me like a bomb) for 2 years. I didn't get nodules under my skin, but did get neurological symptoms and excruciating pain in my lower teeth and gums (RFA for that, which has helped slightly--I do know the nerves grow back [thanks for the reminder], but my teeth/gum pain has been constant and awful for 2 years now, and going on the third year. I had to try something--no doctor I saw knew what the pain was from. Fry gave me Zithro, not an anti-fungal, which seems counter-intuitive. What is P Acnes?
What is a good herxing regimen? All of this is so new to me! What is the best site to get herb antimicrobials?
Posted 3/24/2017 7:19 PM (GMT -5)
For preventing...or alleviating herxes - you will want to employ multi methods of detoxing.

Ideas:


- Drink minimum 8 glasses of water daily
- Squeez some fresh lemon juice into some glasses
- Warm epsom salt baths
- Dry brush your skin prior to baths or showers
- Take Nutramedix Pinella and Burbur
- Support your liver eg: Milk thistle extract (unless you have ragweed allergy)
- support your gut - take probiotics daily


More ideas here:

www.tiredoflyme.com/detox-methods.html

Start with a few methods and every few days add in another one.
Posted 3/24/2017 7:24 PM (GMT -5)
For herbals - you have different protocols to choose from - a couple popular ones:

Buhner's
Cowden

You can purchase S. Buhner's (Master Herbalist) books online. There is one for Lyme, one for Bart and Mycoplasma, and one for Babesia (Lyme Confections)

A couple of recommended sources for Buhner's herbs:

Woodland Essence: (tinctures)
www.woodlandessence.com/herbal.htm

Green Dragon Botanicals: (capsules)

greendragonbotanicals.com

There is an extensive list for Buhner's herbs.


For Cowden there is a schedule online:

www.nutramedix.ec/ns/cowden-support-program

Products are ordered here for Cowden:

www.nutramedix.ec/ns/about-our-products

You can also get many of the Cowden products on Amazon.
Posted 3/24/2017 7:43 PM (GMT -5)
Girlie, thank you!!!!
Posted 3/27/2017 3:58 PM (GMT -5)
Hi all,

Does anyone have neurological symptoms with their illness, i.e. cervical essential tremor, cervical dystonia, etc.? Also, I think I read somewhere that people with Lyme/tick borne diseases should not take magnesium or hyaluronic acid. Has anyone else read/heard this?

Thanks!!
Posted 3/27/2017 4:10 PM (GMT -5)
Yes many of us have neurological symptoms from these infections.

Some I had/have: tremors (resolved now), radiculopathy - nerve pain left shoulder blade, arm,hand(still working on this one...frozen shoulder 95% better, strength getting better, but nerve pain still with me)
...short term memory problems (getting better), POTS (getting better), pressure in head (was better, now worse again), shivers, vibrations, pulsatile tinnitus (much better...almost gone )

There are more - that's just a sample - lol!


Magnesium is something that is usually recommended to take with this infections. I read one of the infections (can't remember which one) depletes our magnesium.

Magnesium can also help with the muscles. Some people use it for their muscle fasciculations (twitches).

Sorry, but I can't comment on the Hyaluronic acid...don't know about it.
Posted 3/27/2017 4:38 PM (GMT -5)
I have mainly Neuro issues, thanks to Neuro Lyme and Bart.

I take 2 forms of magnesium - mag oxide (to pull water into the lower colon) and Mag orotate (for my muscles). I also take hyaluronic acid along with glucosamine and MSM for my arthritic joints - it has helped me a great deal.

There is a ton of misinformation out there about these infections - what to do and what not to do. You need to stick to reliable sources and ask here. Some of us have tried things and they don't work for us, but we can see that others here have had success with them. The beauty of a really good Lyme community!
Posted 3/28/2017 9:03 PM (GMT -5)
Thanks Traveler and Girlie. A question for everyone: I would like to get another opinion besides Fry's diagnosis of Funneliformis mosseae. Which doctors have diagnosed those of you with protomyxzoa rheumatica? I'm in Arizona. I emailed the CDC and received a response that they don't have any information in their database on Funneliformis mosseae.
Many thanks!
Posted 3/28/2017 11:25 PM (GMT -5)
this lady spoke at ilads and has a good herbal tx for proto ...my suspected proto may have been toxolasmosis and responded well to rife treatment ..the bigger the bug the easier it falls imo..
protomyxzoa.org/wp-content/uploads/2013/05/Protomyxzoa_rheumatica.pdf
Posted 3/29/2017 2:27 PM (GMT -5)
Thanks bluelyme. The link isn't working...do you remember the lady's name?
Posted 4/19/2017 10:02 AM (GMT -5)
This thread needs to be revived and Lena please keep us up to date on this diagnosis. As you researched, there are no documented case s of funneliformis mosseae affecting any human.

If we are now potentially affected by fungus that infected only plants in the past then we have to ask how is this possible?

I was reviewing the thread and I noticed I failed to answer a question of yours. P. Acnes is a common skin bacteria that if given the chance, will find its way into the spine causing herniation and pain. Dental implant was the suspected route in my case. It is estimated that up to 40% of chronic back pain sufferers are infected.

I am treating for it but its complex now that I have bartonella taking advantage of the inflamed area in my body.

If I ever miss anyone's question which I am sure happens from time to time, feel free to email me.

Lena said...
Hi all,

Does anyone have neurological symptoms with their illness, i.e. cervical essential tremor, cervical dystonia, etc.? Also, I think I read somewhere that people with Lyme/tick borne diseases should not take magnesium or hyaluronic acid. Has anyone else read/heard this?

Thanks!!


Yes at times there are neuro issues that I believe are Borellia related. There is much debate about whether to feed the invaders what they like to eat as the general thought is to starve them. Dr. K suggests that we are losing to many of these minerals and they should be replaced. He recommends large amounts of zinc to be replenished.

Mineral depletion can cause further illness and damage. Plus the invaders don't die once they eat all of their favorite mineral, they begin consuming their second favorite mineral.


They like to eat hyaluronic acid so this is used as bait by Dr. K to coax them out of hiding to feed and then it is followed by something to kill the then exposed bacteria.
Posted 4/19/2017 12:52 PM (GMT -5)
L. - I saw a doc last year who told me I have Protomyxzoa Rheumatica as well as Lyme with co-infections. P.R. attacks the cardiovascular system and that would answer why I randomly get burst blood vessels in fingers...toes...legs....scary crap because before the vessels burst, there is intense pressure. Los of migraines....pressure in eyes...pain everywhere. Since January, been having awful itching all over my body and where I scratch, little bumps appear then they burst...too weird... I was told by this doc that I would have to get all my blood recycled using a UV light etc...well....not ready for that, so I never went back to that doc..
Posted 4/19/2017 2:33 PM (GMT -5)
Thanks ChickenArise and needhelp4 for your responses. Saw my Dr. last week and was prescribed Plaquenil, which I haven't started yet, but plan to this weekend. My diagnosis is still funnelisformis mosseae, which evidently is the new name for what used to be Protomyxzoa Rheumatica. I found references regarding this name change from BetterHealthGuy and LadyofLymeme. Has anyone else found this?

needhelp4 would you please email me....I would like to know which Dr. you saw.

ChickenArise, I'm taking Zinlori 75, which is 17mg of Zinc and 75mg of Zinc Carnosine twice a day. Did Dr. K indicate how much Zinc we should be taking?

My hair is breaking off and I'm losing much of it. Anyone else had this problem? Anything that will help? Still hurting....and in pain like everyone else with this awful stuff.
Posted 4/19/2017 4:11 PM (GMT -5)

Lena said...
.... My diagnosis is still funnelisformis mosseae, which evidently is the new name for what used to be Protomyxzoa Rheumatica. I found references regarding this name change from BetterHealthGuy and LadyofLymeme. Has anyone else found this?...
ChickenArise, I'm taking Zinlori 75, which is 17mg of Zinc and 75mg of Zinc Carnosine twice a day. Did Dr. K indicate how much Zinc we should be taking?
My hair is breaking off and I'm losing much of it. Anyone else had this problem? Anything that will help? Still hurting....and in pain like everyone else with this awful stuff.

I saw some rhetoric in the comments that PR was now called FM but not a blog article. With todays technology it is difficult for me to fathom that a protist would be mistaken for or reclassified as a fungus. I assume from this change that the DNA differences are almost half and half with a portion of unknown DNA. I do not believe these emerging organisms have been around and are just being discovered as electron microscopes have been around for a while. These organism appear to be emerging in a timely manner with recent emerging diseases.

The rate of the 'evolution' in the genus Bartonella to greater than 40 from 23 in less than one year is concerning but at least it has a classifiable genus. When there is mixed DNA occurring frequently and rapidly it is not evolution as suggested as evolution doesn't happen this quickly.

Dr. K indicated that we may be losing up to 3000 mg per day of zinc so there is no way to keep up with standard supplementation. He also indicated loss of Copper, and Magnesium but that the hair would test high so it would, to a less informed doctor, look like we were getting to much. Supplementing copper is best done as far apart from Zinc as possible 8-12hours.

According to my health notes I was losing an unusual amount of hair and noticed this in February. I cannot pinpoint what caused it to stop. I began cycling Anthelmintics in early November with heavy focus on Ivermectin and praziquantel before adding in others. In January I used Itraconazole for 28days. In February I went back on Fluconazole, I added fat to my nascent iodine intake to 'lipolize' it, began Tinidazole on a 2 week pulse, Biaxin, and Augmentin with extra Amoxy . In March I began DEC, Monolauren, Activated Oxygen and went heavy on the Xylitol. I would be guessing at best at what helped the most. Either Fluconazole, Iodine, or DEC are my best guesses. Hair loss began to slow dramatically end of March beginning of April.
Posted 4/20/2017 9:38 AM (GMT -5)
Lena- that Doc I saw is in Ontario, Canada.
Posted 5/3/2017 12:10 AM (GMT -5)
Greetings All.

Do you get the painless hard nodules under your skin?

I am particularly drawn by this question. This started 9 years ago after a high fever while on a trip to Budapest-Toronto-Phoenix. The nodules on arms and abdomen kept increasing and by Jan 2013 landed me into a constant battle with body and spinal pains. Was diagnosed positive for funneliformis in June 2015 and do respond to Lamisil but with undescribable herx. Take 4 pills for hypertension, bunch of pain killers , quercetine and ubiqinol is my daily regimen. I now pulse Lamisil with Doxy 3 times a week at best after abstaining from both for over 6 months. Highly appreciate any tips to cope with pains, fatigue, I really hope CRISPR Cas 9 trials will succeed in repairing the switched off protein.

Best,
dca

Post Edited (dca-CFS) : 5/2/2017 11:25:32 PM (GMT-6)

Posted 5/3/2017 1:32 AM (GMT -5)

sebreg said...
Hi Lena! I actually see Dr Fry (but he is not currently guiding my treatments), he is the one who first put me on the right path in regards to chronic infections being at the root of my issues. I think he was overly focused on PR and some of these other organisms, I'm not sure how much they particularly drive disease as compared to lyme/bartonella (which I do have but which he kind of overlooked). I like him a lot though. No doctor is perfect. I think he is correct in a lot of basic concepts and he is the one who started me on antimicrobials and actually helped me (this was after seeing a ton of doctors, many very excellent, but clueless when it came to my case).

Herxing has always been a huge problem for me. First drug he put me on was azithromycin, and I remember I had to start that super carefully. Like one pill every other day or something. I still herxed a lot but was eventually able to build up to full dose. I think figuring out ways to detox that can help you are a good idea, plus easing very carefully into the antimicrobials, you don't have to do full dose right away, especially if you have strong reactions.

You might want to explore herbal antimicrobials, and then you could explore abx later? or just start abx but figure out a way to ease into therapy by starting with small doses and not dosing every day. There are a lot of good herbal antimicrobials out there like cryptolepis, Cowden protocol, and many others. What's nice with the tinctures is you can ease nice and easy into it and really control the dosing, like 1 drop and then build up from there.

Wishing you the best!


This is a very good post.
Posted 5/3/2017 1:46 AM (GMT -5)
Hi dca-CFS - welcome to our community!

I did have one painless nodule on the top of my right foot close to my big toe.
It slowly got better with time and treatment ...and now is completely gone.


When you have a moment, you should take a look at the thread at the top of the page titled: "New to Lyme?..Start Here!" It's packed full of useful information.
We encourage all new members to read through it.
Posted 5/7/2017 11:22 PM (GMT -5)
Not your grandfathers Funneliformis mosseae

The rapid 'evolution' beat plays on....Funneliformis mosseae although not directly implicated as cause of death, is confirmed in Human infection.

It's no longer just a plant infection.

/www.ncbi.nlm.nih.gov/pubmed/28411089

...General fluorescence microscopy by Höechst and ethidium bromide DNA stains, prokaryotic and eukaryotic community analysis by Next Generation DNA Sequencing (NGS), and a eukaryotic microbial 9 probe multiplexed quantitative PCR were used to detect and characterize the presence of putative polymicrobial communities.

No prokaryotes were detected in peripheral blood; however, in 4 of 9 sequenced filters and in 2 of 7 sequenced atheroma debris samples, prokaryotic populations were identified.

By DNA sequencing, eukaryotic microbes were detected in 4 of 15 blood samples, 5 of the 9 sequenced filters, and 3 of the 7 atheroma debris samples.

The quantitative multiplex PCR detected sequences consistent with eukaryotic microbes in all 9 analyzed filter samples as well as 5 of the 7 atheroma debris samples.

Microscopy reveals putative polymicrobial communities within filters and atheroma debris.

The main contributing prokaryotic species in atheroma debris suggest a diverse and novel composition.

Additionally, Funneliformis mosseae, ... was detected in the coronary hard plaque from two patients.

Well studied biofilm forming bacteria were not detectable in circulating peripheral blood and were not universally present in atheroma or filters.

Analyses of the sequenced eukaryotes are consistent with a diverse of array poorly studied environmental eukaryotes.

In summary, out of 15 patients, 6 exhibited molecular evidence of prokaryotes and 14 had molecular evidence of eukaryotic and/or polymicrobial communities in vivo, while 2 post-mortem coronary plaque samples displayed evidence of fungi.
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