posted
I have done heavy duty abx for 4+ years. Remediated my house of mold, did CSM and VIP, treated parasites (Dr. K's protocol) corrected my MTHFR issues...
Well it turns out after all of those years of treating, most of the time on a double or triple intracellular protocol, I still had Bartonella. Not just a little either...
I decided I needed to go to Dr. M the Bart specialist. I have been with him since July, and I am getting better. I also tested positive for Protozoa, which I am also treating. I am having runs of days that I am completely symptom free, except for the tinnitus and blurry vision. No pain at all.
He said I should be completely symptom free by the end of November.
I am treating with high dose Rifampin, Biaxin, and Ivermectin for the Protozoa.
I will keep you guys updated with my progress.
Posts: 845 | From Northeast | Registered: May 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
No, I think chronic lyme very much exists, and can ride right along with Bartonella.
I agree and live with you tho that Bartonella is incredibly difficult to eradicate.
Please keep sharing- as you know, my dd is tx'ing Bart currently w/ Biaxin/ Rifampin. Added drops of Cowden Enula for possible Protozoa/ parasite (she's treated in past too).
We keep trucking, hard to be patient, your experience brings hope.
My own Bart experience is too long to write- but no, I cannot be sure it is fully eradicated in myself, despite all my best efforts. Currently looking into gut/ gallbladder testing to rule out 'regular' possibilities,
but hoping it's not Bart having settled there- I know a Mom w/ teenage son had heart valve issues/ surgery/ biopsy- it was Bart.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
countryair, the protocol RC1 is sharing, and that particular Medical Doctor's expertise, DO and CAN work.
And yes, I know adults and children that have treated Bart with LLMD's and stayed in remission.
It's off putting, your posts, claiming to have the one and only true way.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Well said Surprise, thank you.
-------------------- --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
True, what Surprise said. We are all different and respond differently to various protocols, due to having different illnesses, variety of strains, our genetics - including ability to detox or not, our weak places, stresses, diet, etc.
Anyone can say what has worked for them, but we cannot know what is going to work for the next person. We can only make suggestions of things to try if someone is interested.
Posts: 13116 | From San Francisco | Registered: May 2006
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Sent you a PM, RC!
Posts: 3528 | From US | Registered: Apr 2007
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
could someone please PM me the name of Dr M the bart specialist? This resonates with me too. thank you!
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Bart has been a far bigger player in my illness than I ever thought.
I think both Lyme and Bart can be chronic and pervasive, but I believe if you aren't getting better from Lyme treatment, that you should suspect that Bart is a big culprit.
I am so happy you are recovering after so many years of illness - you deserve it! Please keep us posted how your treatment goes.
Posts: 187 | From Connecticut | Registered: Jun 2013
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Yes, yes, yes. I believe Bart is causing ninety percent of my neuro problems and it is proving incredibly hard to get rid of. I've been on this merry-go-round for ten years (I did have a two year remission) and nothing, nothing keeps the Bart away for good. It doesn't help that I always have to drop Bart treatment because the babs gets out of control and vice versa. I will say that when I did Mepron and Rifampin together (I was only able to do this for two weeks), I had the most extreme herxing I've ever had - followed by incredible improvement. I think the combo of the two is very potent against Bartonella.
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
It might not be Babs coming back, there have been times I swore it was coming back. Sweating, heart palps, air hunger, burning muscles etc. but it was Bart the whole time. All of those symptoms are almost completely gone with Bart ttmt.
There is way too much overlap with symptoms to be sure...
If you had a positive test, that's another story.
Posts: 845 | From Northeast | Registered: May 2011
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Mepron and Rifampin together? Wow....rifampin DOES have some anti-parasitic activity so I bet that was a mind blower.
Posts: 3528 | From US | Registered: Apr 2007
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Chronic lyme exists in the absence of bartonella. Glad you have found something that works, though it is not the answer for all of us.
And wouldn't it be nice if we could just have one disease at a time.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
I agree poppy. I do think after years of Lyme ttmt with no progress, that this under treated co infection could certainly be what's getting a good amount of us.
Posts: 845 | From Northeast | Registered: May 2011
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posted
RC1, you once mentioned your liver enzymes went up from the high dose rifampin, and went down as the infection got less. Do you remember how high your liver enzymes (alt/ast) got?
Posts: 381 | From The Netherlands | Registered: Nov 2013
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posted
Mine didn't get that high. My doc says that it's normal for that to happen. I don't know if there is a threshold for what is considered normal.
Posts: 845 | From Northeast | Registered: May 2011
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posted
Hey guys! My name is Laura and I am a student at Penn State. This summer I shadowed my grandfather who is a Lyme literate doctor and all the new information I learned really sparked an interest in me. Now, for my english class I am required to write a research paper and my chosen topic was: Alternative medicine in the treatment of chronic Lyme disease. If anyone at all would be interested in helping me with my research by answering a few questions on a survey, please email me at [email protected] with the subject heading. Survey. Any help would be greatly appreciated and all personal information will be anonymous! Thanks so much, Any replies would help!
Posts: 3 | From Penn State | Registered: Nov 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- lcinelli21 / Laura,
I used to teach college journalism and I've done a lot of personal research in herbal approaches, as I've never had access to a LLMD or LL ND for more than a couple consults. So, I've had to figure out a lot for myself.
Usually, my PM is off as I don't have much energy to communicate but I will turn it on if you want to PM me with some basics about your paper and I'll see what I can do to guide you.
Designing - phrasing - the questions, alone, for ANY survey is really important. Not sure where you are with that yet if you'd like, PM me within one week's time.
While you are very likely exactly who you say you are and in this for the right reasons, there is no way for anyone to really know that just communication via the web.
It is too risky.
What would be best for both you and those from whom you seek a reply is not to either ask for or receive "blind" emails. Instead, connect with your local and state lyme support groups so they can work with you for the best approach to this.
After you have made some connection with the leader(s) of your area groups, then you might branch out to a wider audience.
You can communicate here by PM with other posters. That way, no one is trading private emails at all.
As you say you are "writing a research paper on Alternative medicine and the treatment of chronic Lyme disease" it is necessary to interview various LL NDs and LLMDs who incorporate support methods.
You can create your own thread on the topic and gather posted replies.
I will post one below that is vital to your studies on this matter -- to be sure you have a chance to see it. Beyond this, though, do consider your own thread for your topic. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Herbal Safety considerations & reference books; etc.
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches with links to articles, books, methods . . .
BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever. And that we should never be advised to do neck / head / shoulder stands.) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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"The dalton, symbol Da, is also sometimes used as a unit of molar mass, especially in biochemistry, with the definition 1 Da = 1 g/mol, despite the fact that it is strictly a unit of mass (1 Da = 1 u = 1.660 538 921(73)×10−27 kg).[7][3]"
"The 500 Dalton rule for the skin penetration of chemical compounds and drugs."
But 500 daltons is still too big to penetrate the bones. Look at the size of the molecules in the wiki links. Fundamentally when you make a new molecule of a drug it has to be bigger because they are synthetically combining naturally occurring smaller molecules into something more complex.
This is a fundamental flaw that won't result in complete resolution of a bartonella infection because it doesn't remove the infection from the bones.
Not having symptoms only means it is out of your vascular system.
Posts: 8 | From San Francisco, Ca | Registered: Oct 2014
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How much of a person’s body is attacked by these diseases? How much of a person’s body needs to be addressed to deal with these diseases? Don Mau provides his conclusion, written as a result of his personal study: “Not only does the infection need to be treated as a whole, but the body needs to be treated as a whole because all the body’s systems influence the overall health of a person and these infections are systemic and everywhere in a person’s body.” Mau’s words affirm what many who live with and study Tick/Insect Borne Diseases have also come to know: The disease affects us totally because it infects us totally. Mau has put on the internet the rationale and results of his study, as well as the personal protocol he developed for self- treatment. His website is: http://www.lyme-morgellons.comPosts: 8 | From San Francisco, Ca | Registered: Oct 2014
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
yes, I beleieve that bart can be just as chronic as lyme.
good thing you found out! I am happy for you
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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