STILL don't know if i have lyme

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Aerose91
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Date Joined Feb 2016
Total Posts : 198
   Posted 10/4/2017 11:57 AM (GMT -6)   
I'm sort of banging my head off the desk lately because i still can't figure out if i have lyme or just bartonella. I've been trying to treat lyme herbally just to be safe but I'm reacting poorly to most of them. However, I'm 4 months in to bartonella and mycoplasma treatment and haven't seen even the slightest change so i figure there must be something else. Here's where I'm at with lyme:

7 negative WB tests
3 tests positive for band 41 igg only, one for band 41 and 39
C6 peptide tests negative
Been tested at quest, labcorp, stoneybrook and MDL.

I react fine to bart and myco treatment but no improvement yet

Added cat's claw and got worse almost immediatly: back into psychosis, achiness in joints, intense nightmares, increased fatigue. These were not herxes, i know what a herx for me feels like. Plus, increased detoxing didn't help

Added red sage and had the same reaction to cat's claw but with increased cognitive problems and i started having more severe personality changes

Added eleuthero- no reaction

My herbalist put me on a high dose of teasel and i also had no reaction which he was surprised at. He's now scratching his head, too.

I'm not sure what this means. I'm trying to get in to see Dr M but haven't heard back on if I've been chosen or not so for now I'm on my own.

Herbs I'm on that would hit lyme are knotweed, cordyceps, chinese skullcap, eleuthero and andrographis. I'm not sure if that's enough but it's been 4 months at high dose everything and no response so far.

Does a negative or no reaction to so many lyme specific herbs indicate i may in fact not have it? Even if i do I'm not sure what else i can try right now. I'm just utterly exhausted after so many years of severe disease and am at a bit of a loss.......

Thanks guys, welcome any suggestions

Post Edited By Moderator (Girlie) : 10/8/2017 6:45:01 PM (GMT-6)


RedEyedArab
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Date Joined May 2017
Total Posts : 88
   Posted 10/4/2017 12:29 PM (GMT -6)   
I never tested but I'm positive I got reinfected 2 months ago with some mysterious bug. I'm currently taking high doses of liposomal colostrum, which still makes me herx sometimes. I do think I'm progressing given how stable my mood is lately. Joint pain, imo, is a clear sign of bartonella. Also, the personality changes are bound to happen during herxing given how I experienced it for a good 4 months then went back to normal after treatment. One thing to note as well is the hair and skin improvement I've seen after treating bartonella. Answering your question, yes, you won't feel good while treating and healing will come gradually. It also depends on your genetics, age, lifestyle, etc. Hope you feel better!

goshawk
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Date Joined Sep 2016
Total Posts : 1084
   Posted 10/4/2017 3:55 PM (GMT -6)   
Hi What are your most frequent and most intense symptoms?
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Aerose91
Regular Member


Date Joined Feb 2016
Total Posts : 198
   Posted 10/4/2017 5:07 PM (GMT -6)   
goshawk said...
Hi What are your most frequent and most intense symptoms?


Severe 24/7 dissociation, bright light sensitivity, halleucinations, confusion, amnesia, spaciness, psychosis, exercise intolerance, dysautonomia, air hunger, alternating sweats/chills, racing heart at night.

Less severe are: quad weakness, occasional fatigue, low hormones (dhea, pregnenolone, hgh), frequent urination. Lately been getting a little neck and lower back stiffness. Many, many more but these are the most prominant

Lapis_29
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Date Joined Sep 2017
Total Posts : 276
   Posted 10/4/2017 5:56 PM (GMT -6)   
Aerose91 said...
goshawk said...
Hi What are your most frequent and most intense symptoms?


Severe 24/7 dissociation, bright light sensitivity, halleucinations, confusion, amnesia, spaciness, psychosis, exercise intolerance, dysautonomia, air hunger, alternating sweats/chills, racing heart at night.

Less severe are: quad weakness, occasional fatigue, low hormones (dhea, pregnenolone, hgh), frequent urination. Lately been getting a little neck and lower back stiffness. Many, many more but these are the most prominant


sounds like Babesia to me

http://suzycohen.com/articles/lyme_babesia_treatment/

IV ascorbic acid does wonders for Babs symptoms.

other treatment options to look at

http://www.townsendletter.com/July2015/babesia0715.html

of course its possible its not lyme or babs.

goshawk
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Date Joined Sep 2016
Total Posts : 1084
   Posted 10/4/2017 6:02 PM (GMT -6)   
Do you take anything to help clear the toxins out of your brain?

Have you tried Uncaria rhynchophylla , tryptophan, Ginkgo biloba ?


Have you considered contacting a Buhner herbalist for a consultation? They charge a few hundred dollars I believe.



Cats claw always made me worse also and not a herx.


Yes I also agree some it is babesia, but Bart can cause many neurological symptoms.

Post Edited (goshawk) : 10/4/2017 6:05:05 PM (GMT-6)


Aerose91
Regular Member


Date Joined Feb 2016
Total Posts : 198
   Posted 10/4/2017 6:43 PM (GMT -6)   
I was thinking of ordering some cryptolepis because i was curious about babesia, too. Considering I'm already taking sida & alchornea, is cryptolepis enough to elicit a babesia herx?

I thought about gou teng but wasn't sure since they call it "Chinese cat's claw", i assumed it was like cat's claw.

I have burbur/pinella but rarely if ever see any difference with it. With the exception of a week or so after starting the Houttinoyia i haven't had any herxes

goshawk
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Date Joined Sep 2016
Total Posts : 1084
   Posted 10/5/2017 2:55 AM (GMT -6)   
Hi Aerose1'
gou teng is different than than cats claw tomentosa. I have been taking it for just a year now. Buhner states that it is essential to take if you have neuro Lyme/neuro symptoms.

I dont have any issues or bad reactions with it like I did with the C. c tomentosa.

My llmd highly recommends it and I have been taking full doses of it.

Hope this information helps and It would be good to discuss this with your llmd.

Take care, Jo

Aerose91
Regular Member


Date Joined Feb 2016
Total Posts : 198
   Posted 10/5/2017 8:39 AM (GMT -6)   
Thanks, goshawk. What does gou teng specifically do? I don't have his lyme book. Does it quell your immune reaction in your brain?

astroman
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Date Joined Mar 2014
Total Posts : 3705
   Posted 10/5/2017 8:54 AM (GMT -6)   
"My herbalist put me on a high dose of teasel and i also had no reaction which he was surprised at. He's now scratching his head, too. ""

- sounds like a good lyme test. I used to ask about this forgoten lyme killing herb, very few here use it for some reason.

Jinna
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Date Joined May 2017
Total Posts : 692
   Posted 10/5/2017 3:53 PM (GMT -6)   
Some people do not react AT ALL to teasel.
Teasel helped me just minimally, but I did take it.

in the past, people here in Europe took teasel and cystus for lyme.
Teasel was said to help lyme arthritis patients, but much less neuro lyme.

For me, the best lyme test is Cats claw.
Most people with lyme will react to it (but I don't know if the ones who develop allergies can take it).

I reacted to cats claw (whole herb) for whole 2 years, with increased joint pains, and all herx-toxic symptoms (most were psycho herxes for me).

Virtually everybody with active Bb reacts to some form of cats claw (whole herb or samento).

You only know if what you got are herxes OR symptoms AFTER you take the correct binders, in enough quantity and frequency. If + 90% of those symptoms disappear, it meant herxes.

Before taking correct binders in good amounts, it's hard to know what are symptoms, what are herxes.

Psycho symptoms are often ALSO herxes, specially the anxiety.
People say herxes go away after hours, days.

My experience says: herxes stay, low or high gear, but they never end, unless I take binders.
I know that because they disappear after them!

I also agree that you sound like having an active babesia (that affects mood intensely).

Treating BBB (bor, bart, babs) is a must for most of lyme sufferers.
Babs cause even more psycho symptoms than bart or Bb (for me).

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26430
   Posted 10/5/2017 8:44 PM (GMT -6)   
Jinna said...



Virtually everybody with active Bb reacts to some form of cats claw (whole herb or samento).



That isn't true. I didn't, and I'm not the only one...I know people who didn't react on several herbal protocols.

We're all different - in regard to what works.
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

mpost
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Date Joined Feb 2015
Total Posts : 1075
   Posted 10/5/2017 8:49 PM (GMT -6)   
when u say 7 negative WB tests u mean Igenex?

Girlie
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Date Joined May 2014
Total Posts : 26430
   Posted 10/5/2017 8:54 PM (GMT -6)   
"3 tests positive for band 41 igg only, one for band 41 and 39"


I didn't see this before - band 39 is lyme specific.

Actually for IgM band 41 and 39 is igenex positive, as well as CDC positive.


Or was one band IgM and one band IgG?
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

Post Edited (Girlie) : 10/5/2017 8:57:22 PM (GMT-6)


Aerose91
Regular Member


Date Joined Feb 2016
Total Posts : 198
   Posted 10/5/2017 9:27 PM (GMT -6)   
Girlie said...
"3 tests positive for band 41 igg only, one for band 41 and 39"


I didn't see this before - band 39 is lyme specific.

Actually for IgM band 41 and 39 is igenex positive, as well as CDC positive.


Or was one band IgM and one band IgG?


No they were both igG. My doc.s were suspicious about it because it was quest so I've done 4 tests since then at labcorp, stoneybrook (2) and MDL. Band 41 igG is the only thing that has popped up since so my LLMD's have said no lyme. The herbalist I've been seeing lately wanted to treat me for lyme just in case but I'm having difficulty with all these lyme specific herbs.

@mpost. No, I've never done an igenix test. I've never had a doctor order it

Girlie
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Date Joined May 2014
Total Posts : 26430
   Posted 10/6/2017 12:02 AM (GMT -6)   
IgG 41 and 39 is also positive with Igenex.

Why all those labs, but not Igenex? You can get the test kit yourself...and ask the Dr. to sign the req.


If he won't...go to another Dr. - do you have a chiropractor...or a ND?


You can also go through TrueHealth Labs - no dr. needed. But, you pay more for it.
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

Aerose91
Regular Member


Date Joined Feb 2016
Total Posts : 198
   Posted 10/6/2017 10:31 AM (GMT -6)   
Up to this point no doc has wanted to do it, they have been confident in my existing tests i guess. They also told me in the past that it's close to $1000 to do just lyme testing through igenix and i never had the $ to do it

Girlie
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Date Joined May 2014
Total Posts : 26430
   Posted 10/6/2017 1:38 PM (GMT -6)   
Aerose91 said...
Up to this point no doc has wanted to do it, they have been confident in my existing tests i guess. They also told me in the past that it's close to $1000 to do just lyme testing through igenix and i never had the $ to do it


$210 for IGM and IGG Lyme WB


You can go through TrueHealth Labs without a Dr. but they do cost more - (I think $300 for them)
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

Aerose91
Regular Member


Date Joined Feb 2016
Total Posts : 198
   Posted 10/6/2017 1:45 PM (GMT -6)   
No one ever even put that on the table that i would just need the WB test.

It begs the question though, even if i do test positive for it, what can i do differently? Many of the lyme herbs don't work for me and I'm already on the ones that do. I don't see another doc until January

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26430
   Posted 10/6/2017 3:51 PM (GMT -6)   
So you have seen LLMD's and they haven't wanted an Igenex test done? or an Armin Lab test?

"It begs the question though, even if i do test positive for it, what can i do differently? Many of the lyme herbs don't work for me and I'm already on the ones that do. I don't see another doc until January"

Have you tried antibiotics yet? You mentioned trying to see Dr. M. He would treat with antibiotics.


Is the Dr. you're seeing in january Lyme literate?
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

Aerose91
Regular Member


Date Joined Feb 2016
Total Posts : 198
   Posted 10/7/2017 8:45 AM (GMT -6)   
Nope, no one has suggested igenix. The first llmd i saw used stoneybrook, then the next one tested me through stoneybrook and MDL at the same time, testing with two western blot tests, 2 C6 peptide tests and an Elisa test and still just band 41. The MDL test caught bartonella and c. pneumonia. My current doc wanted to just treat me for lyme herbally just to be safe, but I'm not taking well to many of the herbs.

Dr M is the one I'm going to in January. I'm curious what he will do but until then I'm just trying to fit in whatever hebs i can to cover my bases

Post Edited By Moderator (Girlie) : 10/7/2017 9:32:10 PM (GMT-6)


Pirouette
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Date Joined Mar 2014
Total Posts : 5813
   Posted 10/7/2017 10:15 AM (GMT -6)   
I'm not sure if I would continue testing unless you are having trouble getting insurance coverage... I think you just need to continue testing out treatment modes. Or maybe peace of mind will come with a CDC-pos result? Your call. Ignore all IgG vs IgM noise - it doesn't apply to a microbe that can manipulate the immune system like Bb can.

I had a CDC-positive IGeneX and used various herbs for Lyme unsuccessfuly for about 8 months before I started rapidly losing the ability to walk then started on IV Rocephin, which did help. AL-Complex was one of them (which includes several herbs) and I was at 3 full droppers/day without any reaction.

Yet, I was on pretty low doses of various herbs and combination tinctures for bart and babs with clear cycles of herxing, improvement, etc. So maybe if I had continued exploring herbs for Lyme, or had a specialist helping me, I might have found my herbal sweet spot for Lyme but time ran out for me. Luckily I made a pretty rapid turn-around on the abx.

I also had every one of the sx you listed and more - it does just take awhile to work through all the symptoms to figure out what they mean and what they need (has taken me 4 yrs although I went untreated for 16+). And as time goes by, our bodies and the infections and the treatment - it's all dynamic so it's tough to keep up with it all to adjust properly.

-p

Post Edited (Pirouette) : 10/7/2017 10:18:12 AM (GMT-6)


Aerose91
Regular Member


Date Joined Feb 2016
Total Posts : 198
   Posted 10/7/2017 9:08 PM (GMT -6)   
At this point I'm cutious to see what an accurate test will show considering how wonky my previous tests have been, combined with failure with herbs.

Doesn't the igenix test look for DNA or the actual spirochete or is that not the western blot?

It seems like going straight to IV abx without knowing if you even have the infection is a little risky, no? I'm glad you're feeling better tho, Pirouette

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26430
   Posted 10/7/2017 9:30 PM (GMT -6)   
Aerose91 said...
Nope, no one has suggested igenix. The first llmd i saw used stoneybrook, then the next one tested me through stoneybrook and MDL at the same time, testing with two western blot tests, 2 C6 peptide tests and an Elisa test and still just band 41. The MDL test caught bartonella and c. pneumonia. My current doc wanted to just treat me for lyme herbally just to be safe, but I'm not taking well to many of the herbs.

Dr Mozayeni is the one I'm going to in January. I'm curious what he will do but until then I'm just trying to fit in whatever hebs i can to cover my bases


Dr. M is a bartonella guru. He treats with antibiotics (Rifampin or Rifabutin plus Biaxin.)
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

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26430
   Posted 10/7/2017 9:34 PM (GMT -6)   
Aerose91 said...
At this point I'm cutious to see what an accurate test will show considering how wonky my previous tests have been, combined with failure with herbs.

Doesn't the igenix test look for DNA or the actual spirochete or is that not the western blot?

It seems like going straight to IV abx without knowing if you even have the infection is a little risky, no? I'm glad you're feeling better tho, Pirouette


I edited your post to change the LLMD's name to his initial only - for his protection.

There are Western Blots and PCR tests.
The PCR identifies the DNA of the bacteria.
The WB relies on your immune system to produce antibodies to the infection.

Webinar with DrM on Bartonella

www.galaxydx.com/web/2015/webinar-understanding-bartonella/
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

Post Edited (Girlie) : 10/7/2017 9:59:41 PM (GMT-6)

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