posted
I've been treating for lyme for four years going on five with only about 10 percent improvement. Have been on: doxy, rifampin, lariam for a year with abx, mepron for another year with abx, azithromycin, biaxin, all antobiotics taken with plaquenil, plus iv rocephin, pkus cowden and buhner protocol. Have combined abx with at home ozone therapy.
Right now I'm using edta three times a week to detox high lead levels, and taking pectasol the next day. Even though I've done this before for two months without improvement. I'm also taking 9 mg of ivermectin everyday dor the past month to see if I have parasites that are keeping me from getting better.
So far I feel no different. Doctor aaid he has dobe all he can for me and suggested seeing doctors in new york or a medical psychic.
I've been posting on here for awhile and every once in awhile someone gives some good advice. Thought I'd check today to see if anyone has any advice.
My symptoms are muscle pain and fatigue with sleeping a lot, all symptoms of babesia though I have been treated for this for two years with mepron and lariam.
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Perhaps the dose of mepron is bacteristatic instead of bacteriocidal?
Just thinking out loud.
Also thinking mycoplasma.
Or high HHV6 titers.
Both are wicked for fatigue.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Let me repost here the notes I took on Dr. H's talk about treating babesiosis at the 2011 Lyme Conference. Maybe they will give you some ideas of things to try.
2011 ILADS Conference, Toronto, Canada
Lyme & Babesiosis: Updates on Treatment & Diagnosis 2011
Dr. H 10/28/11
He has 20 years of experience treating lyme; more than 12,000 chronic patients He was in France and China discussing babesiosis. Talked with Chinese CDC regarding parasites
Some of his patients get better with glutathione alone. It opens up the detox pathways (is an anti-oxidant)
Borrelia miyamotoi is showing up in ticks in Hyde Park, NY. This strain is in Japan. We can’t test for it.
There is a new ehrlichia species also found.
Indicators of bad outcome with babesiosis:
male sex, extremely high WBC
We see blood transfusion babesiosis in California. WA-1 is now in the Northeast U.S.. It is found along the entire eastern seaboard. It is difficult to get a positive test for it. LabCorp has a WA-1 test. The FISH through Igenex is also very useful.
He treats with clindamycin with azithromycin, also Mepron, then malarone. There is lots of Mepron resistance. So, he adds Septra (Bactrim). This works well. Also, he uses much higher doses of Mepron due to the Mepron resistance.
He uses coartem (which has Artemisinin in it) Dosage is 4 twice per day. Take at 7 a.m. and 3 p.m.; then switch to 7 a.m. and 7 p.m. It can be pulsed once per month.
You can’t combine this with any med that affects the QT interval.
Babs is spreading world-wide. Babs also suppresses the immune system (based on a study of b. microti)
Artemisinin is not as effective now as it was in the past. Use art when coartem doesn’t cure the person. He no longer uses ketek.
Beta blockers (blood pressure medicines) control these types of parasites. So, use them as an antagonist. We need a study on this. Heparin may also inhibit babs. Need a large study on this.
Curcumin (a herb)--he is now using it to treat babs. Published studies show it is useful for malaria.
Cryptolepis has been used in Africa for malaria. There is a published study in Ghana. It had a 93% cure rate (a 50% cure rate in 3 days; 90% cure rate in 7 days) You can get it at: www.woodlandessence.com
If adrenal function is low (patient has a low cortisol), they will not respond to antibiotics.
He told of a patient with intractable babs. They were treated for babs for 5 years and were not cured. Then, he gave them 1 teaspoon of cryptolepis 3 times per day with Byron White herbs. This is making the patient feel well. He hasn’t found any side effects with the cryptolepis. It may not be curative. It lowers the parasite load and strengthens the patient’s immune system.
Brucellosis also causes night sweats, so check for this in a patient with night sweats.
Use malarone for the patient who can’t clear babs. Low dose to maintain them.
We need new treatment options for babs.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I did have high hhv6 titers f or which the cause of this was unknown but I was given valcyte for six months but it did not help. Actually made me more tired. Are the ticks carrying the hhv6?
Posts: 723 | From boston,ma | Registered: Jan 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Here are some quotes from Burrascano about HHV6:
"However, in the chronic patient, because of the inhibited defenses, the individual components of the co-infection are now active enough so that they too add to features of the illness and must be treated. In addition, many latent infections which may have pre-dated the tick bite, for example herpes viruses, can reactivate, thus adding to the illness." (page 4)
"A huge body of research and clinical experience has demonstrated the nearly universal phenomenon in chronic Lyme patients of co-infection with multiple tick-borne pathogens. These patients have been shown to potentially carry Babesia species, Bartonella-like organisms, Ehrlichia, Anaplasma, Mycoplasma, and viruses." (page 4)
"Chronic viral infections may be active in the chronic patient, due to their weakened immune response. PCR testing, and not serologies, should be used for diagnosis. Commonly seen viruses include HHV-6, CMV, and EBV." (page 5)
Here, Burrascano says you must treat the viruses in the chronic patient:
By definition, this category consists of patients with active infection, of a more prolonged duration, who are more likely have higher spirochete loads, weaker defense mechanisms, possibly more virulent or resistant strains, and probably are significantly co-infected. Neurotoxins may also be significant in these patients.
Search for and treat for all of these, and search for concurrent infections including viruses, chlamydias, and mycoplasmas. Be sure to do an endocrine workup if indicated. These patients require a full evaluation for all of these problems, and each abnormality must be addressed." (page 20)
And, to help you sort out the coinfections, he lists these symptoms for viruses:
"DNA VIRUSES (HHV-6, EBV, CMV) · Persistent fatigue, made worse with exercise. · Sore throat, lymphadenopathy, and other viral-like complaints. · May see elevated liver enzymes and low WBC counts. · Autonomic dysfunction." (page 27)
posted
You eliminated gluten from your diet? Dairy too?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I see you treated heavy metals for 2 mos before. That's nothing. It takes years to get the metals out for many people. The only way to know if they are out is to re test, and then I would do dmsa and edta for the test (better picture).
I'm not sure what your story is on metals (amalgams, etc.), but you may want to search here for Gigi's posts (metal queen).
Parasites are no easy fix either. They don't just come out because you're taking something to kill them. If you have babs, they will hang on for dear life. It's a lot of work to get them out. I treated for a whole year before I saw worms.
Have you read Doc H's book yet? It's really good. Maybe it will give you some insight as well. You might also consider finding a doc who knows how to deal with metals and parasites. IMO, 9mg of iver for a month won't do it. An ART practitioner can give you some insight on what's holding you back as well.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Yes eliminated gluten and dairy and had no change. And there's no way imo that would have been making me this sick anyways
Posts: 723 | From boston,ma | Registered: Jan 2011
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