LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » No response to antibiotics? Is this really Lyme?

 - UBBFriend: Email this page to someone!    
Author Topic: No response to antibiotics? Is this really Lyme?
islander
Member
Member # 40104

Icon 1 posted      Profile for islander   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
I was diagnosed with Lyme's after a positive iGenix test last Summer.
IGM
31 +++
39 +
41 +++
83-93 +
The Dr at the lab told my LLND it was one of the most positive results she's ever seen!
I started doxy in Sept 2012 and then at the advice of an LLMD also added in Tinidazole to the regimen.
Didn't notice any herx, any improvement or any worsening of symptoms at all for 3 months. We're beginning to wonder if this is really Lyme and the LLMD we consult with is too.
Anyone had similar experience?
I then got pregnant (see other post) and some things have been changing but I'm still not sure what to do next!
Thanks for any thoughts, advice, experiences!

--------------------
-

Posts: 19 | From BC | Registered: Feb 2013  |  IP: Logged | Report this post to a Moderator
YinYang
LymeNet Contributor
Member # 36358

Icon 1 posted      Profile for YinYang     Send New Private Message       Edit/Delete Post   Reply With Quote 
It is hard to know. I'm not a test result soothsayer like others on this board. I'll leave the interpretation of your numbers to them.

I responded to your post regarding pregnancy. It's possible that caused a big enough shift that your symptoms subsided.

The question probably is, how much doxy and tindazole are you taking. Sometimes if dosages are too low it doesn't even touch anything.

Posts: 274 | From United States | Registered: Feb 2012  |  IP: Logged | Report this post to a Moderator
poppy
Frequent Contributor (1K+ posts)
Member # 5355

Icon 1 posted      Profile for poppy     Send New Private Message       Edit/Delete Post   Reply With Quote 
How long did you have symptoms before getting a diagnosis? How much doxy were you taking? At lower doses it is bacteriostatic, which means there may not be a herx reaction.
Posts: 2888 | From USA | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
faithful777
Moderator
Member # 22872

Icon 1 posted      Profile for faithful777     Send New Private Message       Edit/Delete Post   Reply With Quote 
I never herxed from doxy, but I herx on the cocktail I am on now. Might be the treatment is not aggressive enough.

--------------------
Faithful

Just sharing my experience, I am not a doctor.

Posts: 2680 | From Colorado | Registered: Oct 2009  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
How much doxy are you on??

I think the Dr meant that you had a very STRONG response with all those pluses. I've seen people with many more bands.

Either way, it would surely seem that you have it!! What were your symptoms that prompted you to get tested?

Western Blot Explanation
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95333 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Robin123
Moderator
Member # 9197

Icon 1 posted      Profile for Robin123     Send New Private Message       Edit/Delete Post   Reply With Quote 
You definitely have a positive test. Since you are pregnant, you need to be under the care of a medical professional who knows how to treat during pregnancy.

It just occurred to me - you're in BC - Dr Ernie Murakami is a retired Lyme doctor in BC who will consult I think for free over the phone. You can google his name and phone number.

Posts: 13049 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
dbpei
Frequent Contributor (1K+ posts)
Member # 33574

Icon 1 posted      Profile for dbpei     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have read that when you are pregnant, you often feel better when you have Lyme because your immune system is working better than it normally would. You obviously have a lot of antibodies working hard for you.

I know that it is recommended to be on ABX when you are pregnant if you have lyme DX so as not to transfer the disease to your baby. As long as you are not suffering from any problematic side effects, I would try to stay on the ABX even if you don't think they are helping you.

Posts: 2360 | From New England | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
dbpei
Frequent Contributor (1K+ posts)
Member # 33574

Icon 1 posted      Profile for dbpei     Send New Private Message       Edit/Delete Post   Reply With Quote 
islander, I just read your other post. I am SO sorry that you lost your baby. I didn't realize this when I posted. I hope you are doing okay.

I don't know how to advise you as to what you should do now. I would discuss with LLMD and if you do take a break, perhaps get retested after having been off ABX for a while.

Posts: 2360 | From New England | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
islander
Member
Member # 40104

Icon 1 posted      Profile for islander   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks everyone, I really do think that Lyme could have had something to do with my loosing the baby if that's what I really had. I went off the Abx during pregnancy as I read from FDA that doxy especially is unsafe during pregnancy. So, dbpei, thanks for your advice on getting retested, as yes, I've been off the Abx for 3 months. Back on again now, and noticing symptoms return as menses return.

YingYang, Poppy, Faithful 777 & Lymetoo - I'm on 200mg Doxy twice daily, so 400mg per day. Then when I was on Tinidazole, I was on 500mg twice a day and 100mg doxy twice a day (halved the doxy dose) I did one week on, one week off and this was at the advice of Dr. M******* . Should this be high enough? Aggressive enough??

Poppy & Lymetoo - My symptoms started December 2012, although I think I was bitten a couple years before that - that's the only time I remember having large swollen bites that at the time I thought were spider bites, and I had 2 of them at once. The symptoms I've been having over the past year have been muscle aches, pains, weakness, severe fatigue ( I used to be a half marathon runner, now I can barely walk to the end of the driveway!), sleep disturbances, nightmares, skin itching but no rash, eye pain and sensitivity to light, hot and cold feverish symptoms, night sweats (mild), increased hypotension. They come and go and right now aren't severe at all since they all dissappeared during pregnancy and are now slowly coming back.

Robin 123 - Yah, we have been in contact with him for some advice. He's actually the one who made us question whether this is Lyme or not. He said I should be responding to treatment by now if that's what I'm really dealing with. I was originally diagnosed with CFS.

I don't have an LLMD but I do have an MD who's very willing to work with us. I don't think he has any experience treating Lyme though, but he does seem to know the "right" dosages when he prescribed doxycycline, and he wrote me a 7 month prescription straight up! He's suggesting we try ceftrixione IV for one month?? Any thoughts?

--------------------
-

Posts: 19 | From BC | Registered: Feb 2013  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
That should be high enough dosages!

Have they checked for babesia yet?

My condolences on the loss of your baby. Sadly, it is not uncommon with Lyme patients.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95333 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
timaca
Frequent Contributor (1K+ posts)
Member # 6911

Icon 1 posted      Profile for timaca     Send New Private Message       Edit/Delete Post   Reply With Quote 
I would consider looking at viruses and other tick borne diseases, especially before trying IV antibiotics. See: http://chronicfatigue.stanford.edu/patient_care/

Best, Timaca

Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
islander
Member
Member # 40104

Icon 1 posted      Profile for islander   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you Timaca, have you had bloodwork done at this lab personally? Or another lab? We're thinking about getting a full panel done at Fry.

Lymetoo - At iGenix I only had the test for Lyme and not co-infections. I've since had test for Babesia, Rochalemea, Erilichia, this was through my MD and so was just the standard CDC tests, do you know anything about the effectiveness of these tests? Am I better paying to go though Fry/iGenix etc? They all came back negative with the exception of one which they wouldn't even run as CDC denied my doctors request to test since they said it wasn't effective! Can't remember which one of the 3 that was though, I've a feeling it was Erilichia.

--------------------
-

Posts: 19 | From BC | Registered: Feb 2013  |  IP: Logged | Report this post to a Moderator
islander
Member
Member # 40104

Icon 1 posted      Profile for islander   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Maybe I'm not seeing any reaction because I'm taking the doxy with food??? Does it really reduce the dosage alot? I tried without food for one week but I almost threw up every time... my stomach is pretty sensitive!

--------------------
-

Posts: 19 | From BC | Registered: Feb 2013  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
Member # 14183

Icon 1 posted      Profile for TF     Send New Private Message       Edit/Delete Post   Reply With Quote 
All lyme doctors tell their patients to take doxy in the middle of a full meal. If you don't you will never be able to continue taking it due to reflux, upset stomach, vomiting.

So, you are doing the right thing. Eat half a meal, take the pills, and then eat the other half of the meal. Do it this way every time.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Judie
Frequent Contributor (1K+ posts)
Member # 38323

Icon 1 posted      Profile for Judie     Send New Private Message       Edit/Delete Post   Reply With Quote 
"I'm not seeing any reaction because I'm taking the doxy with food???"

As long as you're not taking it with calcium/dairy. That's the food that makes doxy not as effective.

I threw up on doxy capsules but not the tablets.

You should definitely test for other coinfections. So far I have 11 other infections going on. Just got blood work back and there were 5 more that I didn't know about. [Frown]

Here's the lab requisition sheet for Stanford. Try to get tested for all of these plus H pylori.

http://chronicfatigue.stanford.edu/patient_care/documents/RecommendedCFSLabs.pdf

Posts: 2839 | From California | Registered: Jul 2012  |  IP: Logged | Report this post to a Moderator
HaplyCarlessdave
Frequent Contributor (1K+ posts)
Member # 413

Icon 1 posted      Profile for HaplyCarlessdave   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm so sorry to read of your difficulties. When I had Lyme, I made little progress until I attacked the coinfections. I do not have a spleen, however-- that is well known to make Babesia particularly dangerous. The chinese-herbal concentrate artimisinin, from the herb Artimesia anua, helped tremendously for that. There are some cautions one should take with artimesia, just like with anything.
I wish you an optimal recovery, in all respects.
DaveS
(note: sloan-kettering's info on
artimesia anua:
http://www.mskcc.org/cancer-care/herb/artemisia-annua

)

Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000  |  IP: Logged | Report this post to a Moderator
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157

Icon 1 posted      Profile for nefferdun     Send New Private Message       Edit/Delete Post   Reply With Quote 
Bands 41 and 23 indicate protomyxzoa and your symptoms also indicate you might be infected with it. My symptoms were/are insomnia, profound fatigue, hot flashes, intolerance to cold (cold extremities), thyroid disfunction, nightmares, brain fog, muscle and joint pain, sensitivity to light, headaches, sporadic air hunger, sporadic loss of voice and sporadic dry cough.

Try taking ivermectin or the human version Stromectol. You should know pretty quickly if it is working. Protomxzoa is a blood protozoa parasite that builds massive amounts of biofilm to protect itself.

It is incurable but you can control it with a low fat whole foods vegan diet. Not what you want to hear, but if you want toget better, you need to know if you have it. You can get tested at Fry Labs in AZ. It is not considered a "lyme" co -infection but most people with lyme have it.

You probably also have borellia and maybe other infections as well like Babesia but PR is probably the dominate infection that needs to be addressed first.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
Razzle
Frequent Contributor (1K+ posts)
Member # 30398

Icon 1 posted      Profile for Razzle     Send New Private Message       Edit/Delete Post   Reply With Quote 
Other parasites may also inhibit Lyme treatment from working...

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

Posts: 4165 | From WA | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397

Icon 1 posted      Profile for sparkle7     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have gone through this, too - re: non responsive to Lyme treatment. I don't really know what to think at this point. My Igenix test was much less of a positive than yours was, though.

Many of our symptoms could be from alot of other illnesses or toxicities. It's so hard to know for sure. The tests may not be accurate, either. I was also diagnosed with CFS & Fibro, as well...

Everyone is different. It's hard to say for sure, "Yes, it's this... or that." Some people do well with alterative treatment & diagnosis like ART testing or with the Bionic 880 infrared light treatments.

Good luck. I hope you can find what is making you ill.

Posts: 7772 | From Northeast, again... | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
islander
Member
Member # 40104

Icon 1 posted      Profile for islander   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks everyone. I feel like we just don't know which direction to go first since we don't have an LLMD "fighting our corner", we're kind of being our own Drs with the help of a regular MD who has no experience. So at this point we're choosing to pay to go private and see Dr B in Vancouver, since we live in BC. Anyone heard much about him? I'm hoping he can give us some direction as to further testing, co-infection treatment etc.

--------------------
-

Posts: 19 | From BC | Registered: Feb 2013  |  IP: Logged | Report this post to a Moderator
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405

Icon 1 posted      Profile for lululymemom     Send New Private Message       Edit/Delete Post   Reply With Quote 
My daughter and I both contracted Lyme in BC.. Doxy was not a good first med for her. She did much better on Ceftin.and Flagyl. She didnt tolerate tinidazole well. Ive heard good things about Dr. B. but never went to him. Dr. C. Is another naturopathic doctor you could consider. Unfortunately medical doctors here dont know how to treat Lyme and dont usually want to treat Lyme patients.

BTW. My daughter had 6 IGM bands positive on her Igenex test.

--------------------
IGM 41 IND, 83-93+ IGG 31 IND,34 IND, 41++, 58+, 83-93 IND

31 Epitope test neg.

Bartonella henselae 1:100

Posts: 2026 | From British Columbia | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Coinfections are often negative .. even when you have the infection.

I would suggest seeing Dr B or even Dr K in Washington.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95333 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
islander
Member
Member # 40104

Icon 1 posted      Profile for islander   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks again everyone, useful input and lots to think about and consider. Lymetoo, could you PM me with the name of Dr K in Washington? Thanks

--------------------
-

Posts: 19 | From BC | Registered: Feb 2013  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.