After being sick for 6 years and treating several tick-born infections successfully, I still have the following symptoms left:
- air hunger - no/low exercise tolerance. Sometimes, my muscles (e.g., calf muscles) are sore as if I did vigorous exercise. - sore and bumpy scalp - palpation - thick, sticky and stringy blood. Hypercoagulation. - sensations on extremities, Neuropathy - bad memory - headache mostly back of the head, sometimes dull, throbbing, burning - neck pain, spine pain - panic attack
I was tested positive for the FL1953 bug in 2011 by Dr. F's lab. I potentially have other protozoa.
I am looking for treatment protocols targeted for this bug.
So far, I have found out the following Doctors are treating the bug but I can't find the details on the protocols:
- Dr. F - Dr. C. in PA - Dr. K in WA / Germany
I would really appreciate it if you could share these doctor's protocols online.
I called Dr. C's office to set up an appointment, but there is a one year wait. So anyone has been treated by Dr. C successfully, please do share the protocol, so I can get started.
Additionally, if you have your own successful treatment protocol, please share as well.
I have read about Nefferdun's successful treatment protocol. Thank you for sharing! It is very encouraging! I will incorporate some elements of your protocol into my regimen.
Thank you all for sharing!
(Editing out city locations of doctors per Lymenet rules)
posted
All I have to add is that after reading about the diet he suggest I found that going low fat and leaving wheat out of my diet made me feel better. Seems he says the diet is very important also.
I look at fat content on everything I buy and purchase gluten free products.
Posts: 805 | From Utopia | Registered: Feb 2006
| IP: Logged |
"I am in remission too. I was infected in 2006 and diagnosed in 2008. I have not been taking anything, not even supplements since October of last year.
I even quit the low fat diet for PR.
The only supplements that helped me were liposomal EDTA to remove heavy metals and degrade biofilm and prickly pear cactus to bind with fat during the time I was getting PR under control. I don't take them any more.
When I was stressed, for reasons other than lyme, I took Adrenal support with bovine adrenal. That was calming.
I continue to take Low Dose Naltrexone every day. I believe that is a big help to my immune system. I rarely ever get the flu or a cold and if I do it is short lived.
So there is hope! It just happened just like getting sick just happened. They key is to figure out which infection is dominate and treat it. I had 6 or 7."
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
posted
There ya go.. She is better. I knew that, but it was not due to any "protocol" for FL1953. Thanks for finding that because I remembered that she went to see Dr F and was very disappointed.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
Following. Is there a hallmark symptom of proto? How easy is it to distinguish from babesia? Is the Fry test accurate for proto?
Posts: 6 | From southeast | Registered: Nov 2014
| IP: Logged |
posted
There was a poster who swore by liposomal EDTA (can't remember brand) and a low fat diet. (starve the protozoa and then you get a higher delivery of EDTA when they try to incorporate liposomes into their biofilms.
FWIW, my doctor does not believe in the low-fat diet, and we addressed protozoa mainly with long-term ivermectin and biofilm tx (serrapeptase, boluoke). I improved a lot clinically right away with the ivermectin (especially neuropsychiatrically, sleep, mood), but protozoa were still present in my blood smear months later.
I've slacked off on my biofilm tx (and some other changes, mostly trying to get back to a routine not dominated by pills and supplement bills), and whether it's related or not, my arthritis has become excruciating.
posted
Superj50: The symptoms list as of like 1.5 years ago was as follows according to top LLMD's meeting like 1.5 years ago. Symptoms: Cold hands and feet, often clammy, Poor capillary refill, skin color changes including pale, dusky, hyperemic (red), purple, mottled, HA, pain behind/in eyes, scalp sores, sinus congestion, PND, teeth pain, palpitations, SOB, air hunger, dry cough, episodic and periodic, abdominal pain, nausea, IBS, Bladder/pain dysfunction, interstitial cystitis, joint and muscle pain, weakness, twitches, profound fatigue, complete loss of aerobic exercise tolerance, sweats (night/day), chills, flushes, dizziness, insomnia, profound brain fog, poor balance, anxiety, panic, OCD, irritability, agitation, impulsivity, ADD, emotionality, hypercoagulability that has been associated with diseases such as CFS, Fibromyalgia, scleroderma, rheumatoid arthritis, Lupus, Multiple Sclerosis, ALS, Parkinsons, Autism, COPD, and others.
The LLMD that treated me with great progress and met with Dr. C and Dr. F was Dr. Hynote (she passed away). But I did Dr. C protocol, rotated Zithromax with ivermectin, alinia, mebendazole, bilticide, rotated herbs and blood thinners.
My latest LLMD who got the notes from Dr. Hynote also gave me extremely high doses of anti-worming, anti-parasitic meds, I believe higher doses than Dr. K. I would just look for a doctor that follows some of these guidelines.
I did juicing and colonics and/or enemas.
Methylation vitamin B. Vitamin D.
That was my treatments from before. I still have insomnia but feel about 85% better.
Posts: 697 | From CA | Registered: Dec 2011
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Happy you posted the thread above Mlg. Lots of good info there, will bump for newbies.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I'm bringing this back up. Anyone treating this? Any progress? had a test at fry labs years ago . I think the tests are more sophisticated now. I am going to get some tests done there. Anyone still doing the low fat diet? I believe my remaking infection is a Protozoa of some kind. Severe head pain, odd sensations at the crown of the head, lumps at the crown of the head. sweats, rapid heart rate etc.
Posts: 2232 | From USA | Registered: Aug 2009
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I am still treating it (like mlg). I have made some progress but it is still there. Yes low fat diet helps, also minuscule animal products as they make it grow.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
hi Haley! I'm still doing the diet, it has been helpful. I recently started working with a new llnd, started me on a few new abx and it sent me into a tailspin herx from hell. Taken me quite a few months to recover, I'm still shaky. Turns out I still have to treat very slowly and carefully.
My worst symptoms are fatigue, pain in back of head, lymph node pain behind ears, severe concentration impairment. Exercise exacerbates symptoms. The head pain is the worst, it is suffocating and excruciating, especially if I am over aggressive with meds the pain gets unmanageable, burning type pain that I just can't compartmentalize. The tailspin herx also triggered nasty burning neuropathy all over my body. I've improved over time but it is a very slow process and I was hoping that since I'd improved I could be more aggressive.
I had been on ivermectin twice a week plus albendazole. The new llnd added in quite a few things, clarithromycin, artemisinin, alinia, grapefruit seed extract. I think the clarithromycin was what really destroyed me, I thought it would be no problem since I had been on azithromycin for a long time and while I herxed never had any severe problems. I'm still having trouble getting back on old meds that I could handle so am going to slowly titrate into herbal treatments and then hopefully add in other things.
I know I have protomyxzoa, but I don't doubt there are a few other things at work, like bartonella or something like it. I try to detox as much as possible but doesn't really seem to help much.
Posts: 30 | From Phoenix, AZ | Registered: Nov 2014
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic