LLMD wants to give 1 month of antibiotics to see I'd I get a better test result

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Nellie2929
Regular Member


Date Joined May 2018
Total Posts : 22
   Posted 5/18/2018 5:23 AM (GMT -6)   
Hi all. I'm new to this forum and have been having weird symptoms since March. Started last summer with plantar fasciitis (I attributed it to working out without shoes for 2 years and I do boxing and kickboxing and overpronation). It got so bad I had shooting pains in my left foot. Went to a podiatrist and he sent me to PT. After about 5 sessions of pt (they were deeply massaging my feet) I started to get weird sensations though my legs and feet and arms. It progressed and I felt numb in lots of places. I have had every test done. Got tested for lyme through quest and it came up negative. Emg states carpal tunnel and ulnar neuropathy. Emg on legs normal but it doesnt feel that way. Mri on lumbar spine normal. Brain mri normal. Got a second lyme test through my llmd from MDL labs. All autoimmune diseases clear. Thyroid clear. Was low on vitamin D but that's now normal.

MDL lab results
IgM band 41 was 28% (considered positive if its 60%)
IgG band 41 was 105 intensity (considered positive)
IgG band 66 was 56 intensity (considered negative since intensity is not 60)
IgG 93 is 29 (again considered negative because not at 60% intensity)

I know band 93 is a lyme specific band

So now llmd wants to give me a month of doxy 200mg per day and then wants to test again in 3 weeks.

I'm terrified of antibiotics and am seeing a homeopathic doc on Monday who know lyme well.

I guess my question is should I take the antibiotics or just go the natural route. I'm afraid the antibiotics will u leash other symptoms and I dint want to be on them forever.

My current symptoms are tingling and buzzing in arms and legs and clogged ears. Some neck pain. These symptoms some and go. I started no gluten no sugar and dairy about mid march.

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1604
   Posted 5/18/2018 6:18 AM (GMT -6)   
Welcome to our forum. Read thru the first topic at the top of this page for good information on Lyme and co-infections.

I'ld question your LLMD's credentials. 200mg a day of Doxy is not the recommended dosage. It's the old school IDSA guidelines. You need 400mg per day to be effective, and for much longer and paired with other ABX combos if you continue with symptoms.

The foot, leg and arm neuropathy are typical Lyme and Bart symptoms. Don't be terrified about taking ABX. Some of us will need them for the rest of our life for maintenance. Others have gotten well going the herbal route. I use both, but have no experience with homeopathic treatment.

good luck with the new doc on Monday.

Nellie2929
Regular Member


Date Joined May 2018
Total Posts : 22
   Posted 5/18/2018 6:47 AM (GMT -6)   
I def am questioning him. At first he said the MDL test was negative. He didnt even receive the blot test at that point and was just going by MDL. He seems to play more on the cautious side of diagnosing. He doesnt like to use igenex. I will read the new to lyme page. Thank you.

Charlie55
Regular Member


Date Joined Nov 2017
Total Posts : 68
   Posted 5/18/2018 7:46 AM (GMT -6)   
You're going to want to slam this borrelia infection back as hard as possible in the first stages of treatment because this is when borrelia is most vulnerable.

It all depends what stages of Lyme you're in, if you caught it early in time and treated with just doxy after getting bit a few days or weeks ago, you could reach remission. But if you let it go at least a few months and let the spirochetes dig into your body deeper, you're going to have a lot problem just treating with doxycycline. And just treating with a single antbiotic like doxy, can make your borrelia infection much more resistant and push the bacteria deeper.

Personally I'd include something like Flagyl or Tindamax right off the bat for the biofilms, also include doxy. At least 2 or 3 antibiotics is a must in early stages of treatment to erradicate the multiple forms of borrelia, such as round body forms, L forms, biofilms, and what we know is causing this bacteria to become resistant, the persister cells.

From my experience, the best supplement to include with your antibiotics to erradicate biofilms is stevia, placing it underneath the tongue for, hold for 30 seconds then swallow.

You can erradicate 90% of your borrelia infection, yet it could still keep coming back because of the biofilms and persister cells. This is what you're up against. Or it could stay dormant and peak it's head out 6 months later or even 2 years later....

tickbite666 said...


I'ld question your LLMD's credentials. 200mg a day of Doxy is not the recommended dosage. It's the old school IDSA guidelines. You need 400mg per day to be effective, and for much longer and paired with other ABX combos if you continue with symptoms.



Upping the dosage of doxycycline really isn't going to help, adding in other antibiotics to combat the the other forms of borrelia and biofilms is what he needs.

Nellie2929 said...
.

I'm terrified of antibiotics and am seeing a homeopathic doc on Monday who know lyme well.

I guess my question is should I take the antibiotics or just go the natural route. I'm afraid the antibiotics will u leash other symptoms and I dint want to be on them forever.



Yeah it sucks being on antibiotics, it really does, but you have to realize you've contracted one of the most resistant infections in the world, very similar to something like AIDs which is serious because it's hard to eradicate because of persister cells.

My opinion, if you want to treat homeopathically, use them with your antibiotics to make them more potent. Your chance of remission by just using herbs is slim to none, regardless of what patients and naturopaths like Stephen Buhner are saying. Remember he makes money off his books by priding himself and his remedies. Do they help sure, but do they put you in remission, no...

There's a reason why elements from plants in the rainforest to make them much more potent for treating bacterial infections. A lot of these patients result to herbs because they end up being dropped from their LLMDs, they don't have the money to pay for a LLMDs, it's basically the only legal form of antibacterial treatment they have access too.

You need to look up the latest breakthroughs in treatment on persister cells and biofilms from John Hopkins. There are herbs that do treat persister cells like oregano, just as stevia treats biofilms. But again, a lot of these herbs don't absorb in the bloodstream well nor do they penetrate into joints and tissue where this bacteria hides.

Nellie2929
Regular Member


Date Joined May 2018
Total Posts : 22
   Posted 5/18/2018 8:34 AM (GMT -6)   
I dont remember ever being bit so I'm assuming im.in the chronic stage. The weird symptoms started in march of 2018. I live in PA

acarined
Regular Member


Date Joined Jul 2015
Total Posts : 175
   Posted 5/18/2018 9:33 AM (GMT -6)   
Nellie2929 said...
So now llmd wants to give me a month of doxy 200mg per day and then wants to test again in 3 weeks.


This technique is not reliable. The theory is that the spirochetes killed by antibiotics will be exposed to the immune system, and a better test result will be produced about two weeks after antibiotics are withdrawn.

Nellie2929
Regular Member


Date Joined May 2018
Total Posts : 22
   Posted 5/18/2018 9:58 AM (GMT -6)   
So what should I do. Not take the antibiotics and look for a new llmd???

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 5/18/2018 10:16 AM (GMT -6)   
Hi Nellie, welcome to our community.

You could ask the "LLMD" how he treats lyme - does he treat with two or more antibiotics at a time.
But, if you're wanting to treat with non-pharma anyway...I don't see the point in going back to him
If it's just for the provocation...I'd pass on it , if I were you.

Maybe finding a LLND would be better.
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

Nellie2929
Regular Member


Date Joined May 2018
Total Posts : 22
   Posted 5/18/2018 11:19 AM (GMT -6)   
Thank you. I tested negative for all the other coinfections with the exception of bartonella. Iwas igm .08 and igg. 80. It's still considered negative and llmd said alot ot us are exposed especially if we grew up with cats which I did. So I'm not sure if that's an active infection. My ebv wasn't active

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 5/18/2018 3:52 PM (GMT -6)   
Nellie2929 said...
Thank you. I tested negative for all the other coinfections with the exception of bartonella. Iwas igm .08 and igg. 80. It's still considered negative and llmd said alot ot us are exposed especially if we grew up with cats which I did. So I'm not sure if that's an active infection. My ebv wasn't active


What is the range of the test for Bart - what’s level is a positive?
If you were indeed positive for Bart - that is significant - You do need to see a LL dr - whether it’s a ND or an MD
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

Nellie2929
Regular Member


Date Joined May 2018
Total Posts : 22
   Posted 5/18/2018 6:12 PM (GMT -6)   
Igm range is <=.89
Equivocal .90-1.10
Positive is >=1.11

Igg ranges are same as the igm

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 5/18/2018 6:56 PM (GMT -6)   
Nellie2929 said...
Igm range is <=.89
Equivocal .90-1.10
Positive is >=1.11

Igg ranges are same as the igm


so your test result was .80 so technically not a positive.

But, the confection tests are poor/inaccurate unfortunately. You can't rule it out.
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
Veteran Member


Date Joined Feb 2015
Total Posts : 1522
   Posted 5/19/2018 1:00 AM (GMT -6)   
u can try an easy abx, amoxicilin for eg for a few weeks

it is what brought me real lyme neuro symptoms out. before i had some vague ones... gi issues, heart palps, etc.

2 months after this i had very positive lyme test results. WB 4-5 bands both igm and igg.

Nellie2929
Regular Member


Date Joined May 2018
Total Posts : 22
   Posted 5/19/2018 4:04 AM (GMT -6)   
So that's what I'm afraid of. If I only have the tingling and numbness why would I want to bring on a million other symptoms. If those symptoms come out then will they stay????

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 5/19/2018 8:26 AM (GMT -6)   
Nellie2929 said...
So that's what I'm afraid of. If I only have the tingling and numbness why would I want to bring on a million other symptoms. If those symptoms come out then will they stay????


If you treat it - you will most likely bring out other symptoms - but if you don’t treat you let the infection worsen and new symptoms will appear.

No way around it - gotta go through it unfortunately .
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
Veteran Member


Date Joined Feb 2015
Total Posts : 1522
   Posted 5/19/2018 8:51 AM (GMT -6)   
Girlie said...
[
No way around it - gotta go through it unfortunately .


that is not true. i saw a youtube with dr philips about a patient that was stable for years after treatment. then she got minor tooth infection was given antibiotics and as a result all hell broke lose again.

if your immune system somehow reaches homeostasis with or without borrelia present i dont think you want to tamper with it.

so if your symptoms are minimal then why treat? all of us here want to have what u have: minimal symptoms...

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 5/19/2018 9:03 AM (GMT -6)   
“My current symptoms are tingling and buzzing in arms and legs and clogged ears. Some neck pain. These symptoms some and go. I started no gluten no sugar and dairy about mid march.”

I wouldn’t let those symptoms go untreated...especially the neuropathy
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
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