if you knew everything you know now, how would you do it over?

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DashGirl
Regular Member


Date Joined Apr 2016
Total Posts : 115
   Posted 1/7/2017 3:21 PM (GMT -6)   
If you had all the crazy info in your head that you have now, how would you have treated differently right from the start?

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4879
   Posted 1/7/2017 3:28 PM (GMT -6)   
Well there were no LLMD in the early 90's. So I would have gone to a specific U of MN Dr who was doing ABX at the time. It was in the newspapers. No internet forums worth bean then, just mostly chat lines If I remember. I would have used permetherin on clothes all the time, they did have this back then too.

Yep, I was right and the idiot Dr I went to was 100% uninformed. My health care did not allow me seeking other Drs at the time. No goggling them ether. That term was not invented yet. We had cars and electricity though, well most people did ha.. ha..

Girlie
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Date Joined May 2014
Total Posts : 32601
   Posted 1/7/2017 3:29 PM (GMT -6)   
I would not have wasted 10 months on lyme only antibiotics...when it was EVIDENT i had bartonella.

How would I have convinced my LLND to prescribe the bart antibiotics?
Here's how: I should have played UP the bart symptoms, and played DOWN the lyme symptoms.

That is what I ended up doing after 10 months.

Thing is, he always said I had bart...so not sure why he let me go so long on lyme abx...other than he is too busy...and goes from one appt. to the next...and maybe doesn't review his notes thoroughly?
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. switched mino to

DashGirl
Regular Member


Date Joined Apr 2016
Total Posts : 115
   Posted 1/7/2017 3:32 PM (GMT -6)   
Girlie, how did you/are you get/tting rid of Bart?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32601
   Posted 1/7/2017 3:38 PM (GMT -6)   
I'm not rid of it yet....don't even know if I'm 'getting rid' of it...

I am on Rifampin...have taken it for over a year...but more recently am taking the full dose once daily instead of divided doses...we'll see how that works...it's only been a couple weeks on that protocol.
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. switched mino to

Rikky1
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Date Joined Jun 2015
Total Posts : 2856
   Posted 1/7/2017 5:01 PM (GMT -6)   
I wouldn't of relied on my positive bloodwork for Lyme/babesia only and would've treated the 3 B's right up front. I basically went nowhere for 10 months until starting to treat with bart specific drugs. They probably also hit Lyme and other stuff but I think I set my road to recovery back by at least 6-9 months. And I was seeing a very highly competent well known LLMD. My issue was my symptoms weren't classic any bug so a broader approach would've made more sense.

Sometimes its better not to have a positive on your bloodwork ;)

CD3764
Forum Moderator


Date Joined Sep 2014
Total Posts : 4510
   Posted 1/7/2017 5:06 PM (GMT -6)   
I would have started Buhner's core protocol and taken the first available appointment with one of the herbalists he recommends.
Apr '14 tick bite -only knew to watch for the rash that never developed
Jul '14 tick bite - inadequate abx from PCP
Sept '14 met LLMD - clinical Lyme dx due to Bells Palsy/started abx (CDC positive IgM)
Feb '15 weaned off abx at 90% healed/started full Cowden protocol
Aug '15 still at 90% -started transition to Buhner's full BBB protocols
Aug '16 99% healed - started modified Buhner protocol

Huddie
Veteran Member


Date Joined Nov 2014
Total Posts : 3139
   Posted 1/7/2017 5:36 PM (GMT -6)   
I would have gone into a time capsule and met Trav earlier, would have known to take astragalus, drink chronic tonic and cover up during tick season = I wouldn't have gotten bitten.

REAL LIST:
-Wouldn't have believed my fibromyalgia diagnosis for past four years.
-Would have been tested for Lyme four years ago.
-When re-infected in July I would have known how to remove tick properly.
-Would NOT have listened to internist who said "Don't worry most ticks don't have Lyme."
-Would have gone on Doxcy. immediately and started herbs (but not sure how I would have known about them)
-Would have moved to Antarctica in my 20s and avoided all of this.

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4715
   Posted 1/7/2017 6:19 PM (GMT -6)   
Ya i would have gotten bart tx sooner too ..would have learned microscopy sooner ,would have learned herbs sooner too,woild have started iv abx sooner too..would have done bvt sooner too guess things happen in timing but ..the damage done arggge..i guess i would forgive " them" and myself sooner

It was only 33 docs and 6 months ..i thought everyone had hypoglycimia ,migraines and the arthritis pain ? And they probably do.....but the muscle wasting n nerve damage wouldnt allow me to take idk for a answer ..**** that bs

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32601
   Posted 1/7/2017 6:24 PM (GMT -6)   
bluelyme said...
Ya i would have gotten bart tx sooner too ..would have learned microscopy sooner ,would have learned herbs sooner too,woild have started iv abx sooner too..would have done bvt sooner too guess things happen in timing but ..the damage done arggge..i guess i would forgive " them" and myself sooner

It was only 33 docs and 6 months ..i thought everyone had hypoglycimia ,migraines and the arthritis pain ? And they probably do.....but the muscle wasting n nerve damage wouldnt allow me to take idk for a answer ..**** that bs


I never had any of those (hypoglycemia, migraines or arthritis.)

Wow 33 docs - that might be the record....
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. switched mino to

Katebirch
Veteran Member


Date Joined Sep 2013
Total Posts : 1265
   Posted 1/7/2017 7:20 PM (GMT -6)   
great question.
I would have gone to the Hansa Center right away. Or more ideally I would have avoided the tick bite and stayed out of the woods completely!

what I did do was: got a tick bite, went to a llnd right away,
Got on a few weeks of doxy plus some random herbs for a few weeks. (banderol and samento and GSE). did those a few weeks.

Waited a couple of months, got symptoms.,
Went to an LLMD. Got on 9 months of doxy, rifampin and malarone ( I would not have done those at all knowing what I know now). they did not help and harmed my gut a lot.

I then (after about 16 months from tick bite) went to the hansa center. and went back and back a few times. Got almost 100% better! Except-- in the last few months, after feeling great for over a year and being totally off everything, one symptom ( or I guess two symptoms) of babesia just popped up again. GRR! And I don't blame hansa- I think lyme and co-s are just these chronic nasty things we have to keep treating sometimes.
So,for me terrible air hunger and tight heavy chest popped up.
Went back to the hansa center. I am now one month into a threemonth (herbal/homeopathic/vitamins) protocol. The air hunger has improved a lot. The chest tightness is now coming and going, but still bothering me. I had three days in a row last week where it was great, I felt much better, and then today and yesterday chest tightness still. sO I am working on this protocol and hoping for continued improvement with it. It is the only symptom I have.

but to answer the question, I would have gone to hansa at the first sign of the tick bite, or as early as possible. And skipped the antibiotics. But I also know if I had not done the antibiotics for myself I would always be wondering if they would have helped me, But they did now help me personally, and the herbal stuff from hansa did. NOw if I can only get rid of this darn babesia symptom of the tight chest, I will be back in the good again.

Huddie
Veteran Member


Date Joined Nov 2014
Total Posts : 3139
   Posted 1/7/2017 7:24 PM (GMT -6)   
Kate,

Was this your first bite?

Does Hansa use Jernigan? I have neuro issues that cropped up and am on third day of Neuro-Toxx II. Having tolerable herxes.

May I ask what the Babesia protocol is? My son has late stage lyme too and Babesia.

The abx. are hard on him. Thinking of Hansa.

Thanks.

Katebirch
Veteran Member


Date Joined Sep 2013
Total Posts : 1265
   Posted 1/7/2017 7:38 PM (GMT -6)   
I always recommend Hansa, I think it is great.

Post Edited (Katebirch) : 1/7/2017 7:52:14 PM (GMT-7)


rowingmom
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Date Joined Dec 2011
Total Posts : 1652
   Posted 1/7/2017 9:45 PM (GMT -6)   
CD3764 said...
I would have started Buhner's core protocol and taken the first available appointment with one of the herbalists he recommends.


Right on CD! We would not have wasted 2 years taking multiple antibiotics. I should have read Buhner's books right away (funny, I initially ordered them but then headed to a prescribing LLMD) and started the protocols on my own.

I thought pharmaceutical antibiotics were the way to go. I was wrong.
DD15 - Born 2001 with light/sound/touch sensitivity. Loss of speech/fine motor ability 2 weeks after 15 month MMR vaccination.
2004 - Dx ADHD, SPD (light, sound, touch), motor delay (with toe-walking), hypotonia, oral apraxia.
2008 - MMR booster and insect bite (bruise-like rash) - motor/vocal tics, emotional lability (including rage), age regressive behaviour, low level OCD, urinary frequency, diminished fine motor ability, insomnia, loss of executive function. Waxed and waned with strep/viral infections.
2010 - Dx ADHD, Tourettes, Aspergers, motor delay, probable PANDAS.
Jan 2011 - shin/forearm pain, cyclic IBS, foot (sole) pain, dizziness, palpitations, chest pain, anxiety/panic attacks, pick-like skull pain, pain and stiffness at base of skull, tingling in extremeties, chills and hot flashes, extreme fatigue, nightly fever.
June 2011 - Igenex PCR positive bartonella, Negative ELISA, Negative lyme (IND IgM kDa 41; IND IgG kDa 39, 34. kDa 41++). CD57 18. Positive ANA (speckled type), heterozygous A1298C MTHFR. Multiple Abx, methyl B12, methylfolate, P-5-P, herbal, homeopathic treatment with LLMD.

Jan 2013 - Bartonella IgG titers declined from 160 (Jun 2011) to 80. CD57 16.

April 2013 - Weaned from abx treatment at 80% improvement. Continued with Full Buhner bartonella herbal protocol, Terry Wahls/PerfectHealthDiet gf/cf/sf diet. Minimizing EMF exposure.

Sept 2013 - CD57 45.

Oct 2013 - All symptoms (PANS and pain/fatigue) 95% resolved. No flares with viral or other infections. Herxing remains with changes in herbal protocols.

Nov 2013 - Clinical babesia diagnosis. Improvement to 98% with addition of Buhner herbal protozoan treatment.

Dec 2013 - ANA titers negative. PANS symptoms resolved. Regular classroom requiring no accommodations. B+/A student.

Mar 2014 - Continued improvement in cognitive/executive function with increased dosages of cryptolepis/sida/alchornea (CSA) tincture.

Sept 2014 - Continued improvement with the addition of red root. Resolution of EMF sensitivities with low dose cilantro tincture and diatomaceous earth. 99%

Sept 2015 - Present - complete resolution of lingering ticcing symptoms with removal of PUFA supplementation (CLO, hemp oil, fish oil etc). 100%

GTIXJ
New Member


Date Joined Apr 2017
Total Posts : 14
   Posted 9/4/2017 3:55 AM (GMT -6)   
rowingmom said...
We would not have wasted 2 years taking multiple antibiotics. I should have read Buhner's books right away (funny, I initially ordered them but then headed to a prescribing LLMD) and started the protocols on my own.

I thought pharmaceutical antibiotics were the way to go. I was wrong.


Anyone check in with RowingMom at all or email her? Not sure if she gets notifications but there's no way of PM'ing or emailing her from here either.

Has the improvement lasted? I think we saw/seeing the same LLMD.

Sounds like the dedication and research paid off, I find there's so much conflicting data out there that I don't see a point reading any of it. But that's laziness, I don't know.

goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2108
   Posted 9/4/2017 4:38 AM (GMT -6)   
Hi GTIXJ and welcome to our forum,
I'm not sure if rowingmom comes on much anymore. This is an older post. This will bump it up though and maybe another member will have information on her status.

What works for us can vary per individual. Some do well on just ABX or herbals, but many have to mix it up and/or use alternative therapies like bee venom, rife,supplements, mindwork and more.

There is much information out there but Buhner, Rawls and Horowitcz books may be the best about these infections.

You can reach out in a new post asking if anyone else has recommendations/information on how well they did with your llmd. Just don't post the Md's whole name.( Ex:Dr. R in such in such area).


Take care and I wish you the best of healing.
Forum moderator

The Warrior
Regular Member


Date Joined Jun 2017
Total Posts : 104
   Posted 9/4/2017 8:59 AM (GMT -6)   
Good post!

I would've stopped over-obsessing with Candida as the only cause and also would have stopped thinking: "Nah, lyme is too crazy, I don't think that's what's going on."

Even when my Integrative/Functional Medicine doctor said this looked too much like lyme, I was still internally like "nah". After an inconclusive Elisa and Igenex, she still insisted in a PCR, and boom, there was the undeniable proof. Now looking back that woman saved my life. The most ironic part is that she wasn't that well versed in lyme, she was just starting to learn. So as soon as I learned about my diagnosis I went on full research mode and information binge. And a day later after an information overload and comparing protocols I already knew which one I wanted to pursue. Maybe this could've happened much before, but it didn't and I'm in peace with that!

So yes, I did have a candida/yeast problem but that wasn't the only thing that was going on. And for that I would've never never never ever stopped taking probiotics. I can't stress enough the importance of probiotics.
First symptoms in 2014.

Diagnosed in May 2017:
•Borrelia Burgdorferi
•Bartonella
•Babesia
(DNAConnexions PCR)

Other Conditions:
•MTHFR mutation

Started treatment in May 2017:
•Dr. Zhang's herbal protocol

Jinna
Veteran Member


Date Joined May 2017
Total Posts : 692
   Posted 9/7/2017 9:42 AM (GMT -6)   
I would have gone directly to dr K's practitioners and get treated by them.

I would have dismissed all drugs and all conventional doctors.

I would then have added biophoton + nosode therapy from start to get rid of Borrelia first (much easier to deal with other problems later).

I would have bought loads of binders and stocked them.

I would have started treating all dead teeth and root canals.

I would have eliminated all sources of wifis and electrosmog, specially during sleep.

I would have experimented with the Violet Ray from start, to gain energy.

canadaval
New Member


Date Joined Apr 2018
Total Posts : 1
   Posted 4/10/2018 9:00 AM (GMT -6)   
Hi rowingmom,

I am new here and joined because I found a message posted by you about a doctor who treats Lyme in Buffalo. I can't find that message now but remember that I had to somehow message you directly to ask for that information. How can I do that? Can you send me that info?

BabsBunny
Veteran Member


Date Joined Mar 2017
Total Posts : 530
   Posted 4/10/2018 11:48 AM (GMT -6)   
canadaval said...
Hi rowingmom,

I am new here and joined because I found a message posted by you about a doctor who treats Lyme in Buffalo. I can't find that message now but remember that I had to somehow message you directly to ask for that information. How can I do that? Can you send me that info?


You have to enable your direct messaging to receive replies, and click on the envelope below the members name to send direct messages. Rowingmom does not have message enabled.

This is an old thread. You will get more responses by starting a new thread with your question or just introduce yourself.

In the meantime you can search the forums in the right side search bar.

Welcome to the forum
Lyme, Babesia, Bartonella. Symptoms began 5/2016, didn't start treatment until 9/2016. Slow but steady recovery.

*twitch twitch*

ChickenArise
Veteran Member


Date Joined Nov 2015
Total Posts : 1506
   Posted 4/10/2018 1:51 PM (GMT -6)   
Patch that roof leak sooner for sure.

As far as treatment goes, the only thing I might do differently is try MMS or CDH first as it might be a cheaper effective way to treat.

If I didnt get the results from this I would do the same thing that I did, treat the fungal first and continuously, while repairing my thyroid with nascent iodine, then treat the parasites, and then the bacteria using lots of binders in rotation while detoxing including ozone and IR sauna.

I had thought for a while that I may have had this order backwards but I was happy to read other supporting documentation suggesting that this was the correct order.

Now to get all that mold out of my brain and tonsil walls somehow.

2014 Mold Sick,2015 Clinical Lyme and co.,2016 Morgellons,2017 Remission
YT: ClintFromNYtoVA2
Twitter: @ClintFromNYtoVA
Blog: www.fascinatingtimetobealive.blogspot.com/
" The path to disappointment is paved with expectations "

Post Edited (ChickenArise) : 4/10/2018 2:00:34 PM (GMT-6)

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