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missy_j78
Regular Member


Date Joined May 2017
Total Posts : 21
   Posted 6/15/2017 5:01 AM (GMT -7)   
Hi - I feel like a bit of a fraud and could do with some advice!

I had a positive Western blot test result about 2 months ago (IgM 23 and 39) and my consultant in conjunction with my neurologist started me on 2g Rocephin IV (I go to the hospital every morning for this).

I have also been doing my own detoxing as suggested by you lovely people on this forum (body brushing and salt baths), as well as taking probiotics.

So! The thing is, I have had no reactions, no symptoms, I don't feel anything at all. I mean, I feel fine, not amazing but just fine, which is not what I was expecting. I still feel tired (lol I'm always tired) but my naturopath said by Vit D and B12 are low so that could explain that.

What does this mean? Is it working? Is it not working? What else should I be doing? Do I not really have Lyme?!

I don't have a proper LLMD - they don't have them here in the Middle East where I currently live but my doctor and neurologist are doing a fair job between them. I also consulted a naturopath for holistic support but I haven't really gotten much other than the standard probiotics and vitamin supplements (oh and Coptis Tox, that's the only "out there" thing).

I'm just confused... I'm due to finish the Rocephin in 7 days and I don't know, I guess I was expecting something to happen, and nothing has, and now I'm feeling baffled and deflated? Am I ungrateful for feeling nothing/just fine?!

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 6/15/2017 5:46 AM (GMT -7)   
Do Not Feel Guilty!!! Some people don't herx!! Their body is not as compromised and they detox well is all. You should soon begin to feel improvements in symptoms.

As long as you are getting the meds you need, in the doses known to be effective for these infections, then a "real" or "proper" LLMD is not necessary. It's been our experience that it's very difficult to find a doctor that is willing to treat these infections properly that hasn't been through ILADS training is all. Although, it does happen!

I don't know enough about the abx to help guide you through that part - but we have lots of other members that will be along shortly I'm sure that know that well!
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 6201
   Posted 6/15/2017 8:48 AM (GMT -7)   
Hi missy_j78 -

Well, you are lucky on several accounts to not experience a lot of herxing.

A couple questions -

Did you ever have any associated symptoms or did the MDs decide to treat you based on the test results, alone?

What made you seek a diagnosis or treatment?

Do you know why did they decided to use IV Rocephin vs. oral abx?

I have been on IV Rocephin for 2 yrs - FINALLY went off it about a month ago with success. I was plagued with a lot of sx for 16+ yrs before I started treating but had a pretty easy time on the Rocephin once I got past the 1st month. I had no real herxing, just a slow decline of my sx, which was ideal. Most of my herxing was due to the several other antimicrobials I was on.

I'm not sure I can share anything scientific to answer your question - I agree with Traveler that you seem to be able to metabolize the Rocephin well. But also wanted to share that other than the initial month, I also didn't really experience any herxing on Rocephin for nearly two years.

I encourage you to incorporate some herbal antimicrobials now - so that your transition going off the Rocephin is a little easier and you maintain some antimicrobial coverage. Your lack of sx could indicate a low level of Bb or it could just mean that you are asymptomatic. Not everyone who tests positive for Bb actually have Lyme disease (which is generally understood as the manifestation of the Bb infection, not just the presence of the microbes).

You also might take a cyst-busting form - I like the Nutrimedix samento and banderol for good measure.

Hope that's helpful -

-p
Lyme Moderator
Chronic late-stage lyme—likely infected in '00; Clinically dx Mar'14 w/ Babs, Fry Labs+ Bart-like, CDC+ Bb. First treated 4-5 viruses & GI/immune. Herbal antimicrobials in May; IV port-started Rocephin in Nov; added vancomycin Mar'16;
DETOX: Pinella/Burbur/Parsley/Milk thistle/Burdock/Red root; Samento/Banderol/Enula; JK/Turmeric; BFM-1; antifung; many many supps; cholestyramine!

multifacetedme
Veteran Member


Date Joined Jan 2016
Total Posts : 1574
   Posted 6/15/2017 10:09 AM (GMT -7)   
Listening and caring...
Lyme Forum Moderator. Began considering lyme in January of 2016. Felt largely symptom free in December of 2016. Relapsed a bit, integrated new herbs, rallied. Still have symptoms, but my energy and strength is fully back! Just using chronic tonic in the moment.

Kat1000
Veteran Member


Date Joined Feb 2017
Total Posts : 557
   Posted 6/16/2017 1:44 PM (GMT -7)   
As Pirouette asked, what were your symptoms prior to treatment? Is the fatigue new?

I've read that most people have "something" due to all the toxins in the environment. It's even possible to have lyme bacteria for years and not have symptoms unless your immune system becomes compromised. And everyone reacts so individually to bacteria, meds, that you really have to listen to your own body.

I"m taking a break from antibiox right now and using herbs and supplements, but I'm paying attention to symptoms and trying to strengthen my immune system.
Symptoms started early 2016 - possibly earlier?
pos for MTHTR single mutation
Positive Igenix IgG Jan 2017
LLMD first visit March 2017 - symptoms for borrelia, bart, babs?
March/Apr '17: doxy, Tinizadole. 5/1 samento and exchange mino for doxy. 5/28- switch mino back to doxy, added activated charcoal.

Jinna
Veteran Member


Date Joined May 2017
Total Posts : 692
   Posted 6/17/2017 2:44 AM (GMT -7)   
Missy, even a POSITIVE Westernblot is NOT a lyme diagnosis!

Many people in my area are WEsternblot positive without symptoms. So say dr. Rau from Paracelsus Clinic.

If you have a positive Westernblot and no lyme symptoms, you are probably not ill with lyme. You had contact in the past with the bacteria, but your immune system managed to keep it under control.

Most people who are constantly bitten by ticks will have some positive Westernblot bands for lyme related diseases, but won't necessarily be ill with lyme. That is what Dr. Rau thinks, accordign to a research that happened in my area here in Switzerland / Germany: most farmers are positive!! but symptomless!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27867
   Posted 6/17/2017 8:26 AM (GMT -7)   
I'm thinking Missy had symptoms - which prompted her getting tested?

Hopefully she will post again.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

missy_j78
Regular Member


Date Joined May 2017
Total Posts : 21
   Posted 6/18/2017 11:19 PM (GMT -7)   
All, I'm so grateful for your responses and sorry about the radio silence.

@Pirouette, yes I had the full gamut of symptoms ranging over the last 10 years. I was bitten in 2007 in New York and vividly remember the rash (I had more than one at the same time) but just figured I had a bad reaction to the bite(s). Fatigue is pretty much permanent but I also have low B12 and B5 which could account for that. More recently in the last 6 months - year I've had full on neurological symptoms, so my Dr who had prescribed doxy was overruled by the neurologist who wanted to start Rocephin immediately as felt I had Neuro lyme and didn’t want to waste any time. Today is day 24 of 28 of treatment.

I actually diagnosed myself, all of my doctors have consistently told me there was nothing wrong with me and this doctor was also extremely sceptical but she did do the tests I asked for and couldn’t have been more surprised when they came back positive. I think once I'm finished the Rocephin they will be like – well you've done the abx and you seem fine now so off you go.

So I guess I'm back to relying on myself - thank you for the suggestion about starting herbs, supplements and cyst busters, I think that's a good next step. Now to find a naturopath here that can help me obtain them! I know you can do these things yourself but finding stuff here is so hard.

What can I do though apart from go back to them if any symptoms return? Can a 28 day dose of IV abx really "fix" this and is that what they believe?

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 6/19/2017 7:02 AM (GMT -7)   
Depending on exactly where you are, I may have a LLMD contact. Would you email me if you are not comfortable putting up your location on here?

28 days can clear an early infection, but I'm guessing this isn't an infection still in it's earliest stages? If not, then no, the 28 days is not likely at all to get these infections under control, especially if you have only used the one abx. But, yes, that is what most ID docs believe.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

missy_j78
Regular Member


Date Joined May 2017
Total Posts : 21
   Posted 6/20/2017 7:54 AM (GMT -7)   
Thanks @Traveler, I have emailed you smile

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35859
   Posted 6/20/2017 8:10 AM (GMT -7)   
Got it! Thank you!! Do let me know if you don't get my response!
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/
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