posted
Been treating 5 years. Only positive test ever was babesia IgG. I had alot of the symptoms-chills, sweats, fatigue, slowed thinking. I always had a band 41 on Lyme WB, and a positive for the motile extra cellular bacteria from Clongen.
Early on, I had four weeks treatment from two different IDSA folks with mepron +zith. Some symptoms imoroved but I was left with alot of other issues, primarily neuro.
Since then I have done multiple multiple rounds of ABX . I have seen 1 LLD who thought I had bart, two Maryland LLMDs who also thought bart.
I had months of brain fog, depersonalization, myclonus, brain zaps, tremors, and gushes of saliva into my mouth. Also a mild recurring slurring of speech. I have had mild sweats both night and day and they continue.
I have done levaquin, cipro, factive, bactrim (paired with doxy,mino, zith, etc.). Most helpful was Rifampin, zith, and tindamax, which I was on for 15 months, (pulsing ART until January) ending in April of this year.
In between the bart combos I've done various combos of malarone, biaxin, plaquenil, clindamycin and a brief stint on ceftin. On my third shot at mepron my liver counts went sky high and took 3 months to return, so that's not an option.
In April I did a month of cryptolepsis.In April and May I also did three day courses of coartem. On the second day of the second round, I broke out from knee to ankle in raised red bumps all over both legs. My doc though maybe an allergic reaction.
Through all this, my hypothyroidism has needed to be monitored:It took a beating on Rifampin. I am also in menopause.
Long story short, my doc decided to rerun some tests to see where we were. I felt really lousy at that point (although I am fully functional , work a stressful full time job).This was at the end of May.
My symptoms were a thick sensation in my throat, facial and body twitching, a very odd feeling like papier mache has dried on my face, minor stuttering, and burning legs , toes, and the occasional painful joint.
I was very anxious and depressed.Through all these years, one eyebrow rises and falls with not much of a pattern.I have had a constant stuffy nose for two years and live on Mucinex.
Test results All Bart negative, Erlichia negative (Labcorp) Babesia Microti IgM Neg IgG 1:20 High Babesia WA-1 Both negative Lyme PCR Negative Lyme c6 Peptide Negative TSH 6.5 High
We switched my meds to malarone, plaquenil, and a round of diflucan just because that made sense. I will continue to pulse ART, added berberine, and am adding banderol and samento. Increased my thyroid meds.
I will stay on this until I return from a trip to Spain in mid-July. I feel much better already, after only one week. I felt an instant change on the first day and I am struggling to sort out what is thyroid, etc.
When I return the plan is to add Ceftin, Zithro and mycobutin.
I'd love anyone's thoughts. I eat quite well (not perfect) exercised until May (when Levaquin bothered me and I need to start back), don't smoke or drink.
For any newcomer reading this, as horrific as it sounds, I am 1,000 times better than when i started and my quality of life is just fine. I could live like this and be ok, just so I don't discourage anyone.
I would love ideas on a parasite program but neither of my docs were or are into that. Also any other observations, ideas, comments from anyone who lasted this long. Thanks to anyone who even reads this LOL.
Posts: 520 | From Maryland | Registered: Jan 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Time to go after the parasites!! Very unsettleing to read that doctors are still in the dark when it comes to parasites. Some people her are doing well on Ivermectin and doxy.
You can also try starting with something like Parastroy, and then up the anti with other antiparasitics and maybe salt/c down the road.
I was on abx for 4 yrs and wasn't making any progress until I started antiparasitics.
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
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posted
I see you did well on tindamax. I would probably suggest trying flagyl -- much stronger med. But need to be on strong lyme meds when you do this.
I would add in sida acuta -- but at 1/2 or 1 teaspoon dose for a month or so -- supposedly works on both bart and babs.
Also would add in ivermectin -- hubby had Clongen try to DNA sequence the extracellular motile pathogen that is attacking his WBC -- lab was not successful and is now thinking there is some possibility it is a parasite rather than a bacteria.
And finally I would work really hard on trying to improve the immune system -- would use some adaptogens such as eleuthero, rhodiola and/or ashwagandha and maybe add astragalus.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Docluddite, I am now on 100 mcg Synthroid and 5mcg cytomel in the am and 5 mcg cytomel in the pm. Thoughts?
Bea, thanks, I always appreciate your help.
Posts: 520 | From Maryland | Registered: Jan 2007
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
I agree with the ivermectin and sida acuta , which might help with a broad range of protozoa / zoonotic organisms. Grapefruit seed extract also hits a wide swath of pathogens.
I am more inclined to consider that all of us have something like a filaria or protozoa issue.
I am NO EXPERT , but 3 antiinfectives I have tolerated well are : GSE , artemesia annua (Herb Pharm ) and Nature's Way andrographis . The concentrate herbs are harder for me than the whole herbs . Also , since I am leaning toward a parasite / protozoa conclusion ( personally ) I am now rotating herbs and sometimes throwing in fresh garlic , oil of oregano capsule , and 2 capsules of cloves , or 3 capsules of turmeric. Some of the plant meds are antioxidants and seem to kick the parasites along with ivermectin .
I would definitely add ivermectin because of Eva Sapi's info that docs in Europe are having good reults and her findings with ticks with filaria infection. Beware the punch it can throw starting out .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
PS How about mycoplasma pneumonia or EBV ? They are often part of our problem, and the antiinfectives I mention can make a difference with them .
If it were me, I would also do everything possible to boost glutathione, and add chaga mushrooms ( read sloan kettering opinion online! ) It boots immnue function AND kills viruses and bacteria .
First I would get used to ivermectin ( OWWW ) and then rotate other herbs and then add chaga . I herxed with chaga and with boosting glutathione for a while, so I have learned to add one thing at a time.
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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posted
Seems like a lot of T4 and not much T3, does your body temp run anywhere near 98.6?
Posts: 60 | From Maine | Registered: Jan 2012
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posted
Seems like a lot of T4 and not much T3, does your body temp run anywhere near 98.6?
Posts: 60 | From Maine | Registered: Jan 2012
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I am no expert. Plus, I know nothing about sida acuta (asked my doc but he didn't know). But I really like annxyz's suggestions. :)
-------------------- --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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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Are you saying LabCorp did the bartonella testing? If so, Galaxy would probably be a better choice.
If you are questioning whether you still have lyme (some of those indeterminate bands are lyme specific), maybe consider culture test, should you be able to afford it. But have to be off meds for a month.
Posts: 2888 | From USA | Registered: Mar 2004
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