Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Hi All: I have been off abx for 15 months (except for a month stint of bactrim for an ear infection, and 3 weeks of zyth before that as an attempt of a challenge) I was on multiples for 18 months, including flagyl for a very long time.
In general I feel normal. Normal for me who has had "fibromyalgia" my whole life.
I am hesitant to go back to my llmd... I am not sure I want to uncover every microbe. Not sure if the cure is worth it ... But I definitely do not want to go back to where I was before I treated.
I am trying everything I know to do... Eating healthy... I'm Exercising regularly for the first time in my life.
But part of me wants to put the bugs to a test. Challenge to see if I Herx. If I did I would go back to llmd.
Could I do this with tindimax only? As I've read that it fights all stages of the bacteria. I've never taken tindi. Would I be better challenging with a combo of the drugs that seemed to work best while I was treating?
Or should I just leave well enough alone?
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Greta, that is exactly where I am... But Also since being off abx my inflammation markers keep getting higher. And my muscle pain is back.... It was gone on abx, albeit my joint pain was worse. (I've wondered if my muscle tension and fascia is actually holding my joints together. Lol)
My headaches have leveled out. My emotions are great.
But then I have those moments when I was on abx like for the ear infection (bactrim) where pains I've had in my feet for 4 years went away.... But then I got a rash. Went off and the pain came back. But I hold onto what if that pain was Lyme? (It came on in both feet my first week of treatment)
I'm doing everything I need to do and most things I want to do albeit a little slower...
If I herxed on tindi... I would go back to my llmd... Who I was not thrilled with... But did take me to a place of my normal... I left her abruptly cause my gut have out, then I broke my ankle, then I just couldn't bring myself to go back (which may be my answer right there)
But my pcp seems to be at crossroads. She doesn't know what to do to help me... To help my inflammation. We've tried diet, I'm trying excersise. I know I can't take NSAIDs, (Gut) afraid to take prednisone, have not been able to take natural anti inflammatories (curcumin, berberine) I get an allergic reaction.
But I'm at the point where I may try either prednisone or shots in my feet again ... Or try a low anti-inflammatory dose of doxy (but then what about the cysts?)
I just feel like I'm stuck between a rock and a hard place.
I'm also 29:). I'm in my early 50's. My husband is 10 years younger. I feel a need to stay young I also work in a young persons business.
Wow! Thanks for the free therapy session!
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi Kudz
Yes, I am 29 also. What a neat coincidence that we're all the same age!
I know what you mean about trying everything you can try.
Before my lyme dx, I tried everything to try to get rid of the fibro and arthritis pain. Diet exercise swimming massage acupuncture gluten free dairy free allergy testing etc etc
I can't even remember the amount of snake oil remedies I've tried, or methodologies etc.
And you know me and my dang rashes...
Well, I think we're twins just in different countries.
I like tindi.
When I first started tindi,
Pulsed 1 week on, 1 week off.
Then, when my LL was sure I had no herx,
Pulsed 2 weeks on, 2 weeks off.
It has a long half life, so the longer the pulse on, the harder it hits.
I have only done one 2 week pulse. And about day 9, I felt fatigued, and got a bit of the lyme toxic feeling. (joints sore, head pain etc.)
In the middle of two 2 week pulse now. Feel good so far.
I do NT detox, activated charcoal, chorella because of the other abx I am on also.
Tinidazole can increase yeast, so probiotics, florastor are necessary. And has to be taken with food.
To be honest, seeing we're twins, , the one week pulses at the lighter doses of tinidazole, I ALWAYS felt better, a little lighter in energy the week on tinidazole.
I think it decreased my autoimmune/inflammatory response. Was never measured by a lab.
But I always felt better. Less inflamed-swollen, irritated. Don't know how to describe it. If muscles could be bloated... Mine felt less bloated.
Ok now I'm rambling. But hopefully you know what I mean.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Kudz, what about systemic enzymes? Like Wobenzyme?
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
quote:Originally posted by Kudzuslipper: have not been able to take natural anti inflammatories (curcumin, berberine) I get an allergic reaction.
Have you tried NAET to treat the reactions to the herbs?
Posts: 1927 | From se usa | Registered: Mar 2010
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"I know I can't take NSAIDs, (Gut) afraid to take prednisone, have not been able to take natural anti inflammatories (curcumin, berberine) I get an allergic reaction."
It sounds me. I just did genetic testing and my body just doesn't have the genes to process NSAIDs. Curcumin was counter-indicated (it creates bad estrogen in my body).
When I tried curcumin, I had a bad reaction to it too.
Have you been tested for viruses? They can aggravate fibro symptoms.
Here are some articles:
http://www.longevityhealthcenter.com/chronic-fatigue-syndrome-fibromyalgia.php "Chronic Fatigue Syndrome and Fibromyalgia are primarily viral syndromes. The causative agents are Epstein Bar Virus (EBV), Cytomegalie Virus (CMV), and Coxsackie Virus. EBV and CMV are both Herpes family viruses and both cause mononucleosis in their acute infectious stage. Coxsackie virus is in the polio virus family. Other viruses in the Herpes family have also been implicated in these illnesses, but not as frequently."
"A recent book, The New Fibromyalgia Remedy: Stop Your Pain Now with an Anti-Viral Drug Regimen, delves more deeply into the connection and suggests that antiviral medicine and food allergy treatment can be quite effective. Author Daniel C. Dantini, a Florida otolaryngologist who himself has fibromyalgia, says he believes that fibromyalgia is caused by the Epstein-Barr virus, cytomegalovirus, herpesvirus 6, or parvovirus. He says antiviral medications work in 70 to 75 percent of his patients..."
I have Lyme and several viruses. My LLMD believes some of my symptoms are because of the viruses (HHV6, cytomegalovirus, Epstein Barr, coxsackie, etc...).
NAET did nothing for me and was a bad money-sink. It may work for some, just realize you might get no benefit and if it's worth the financial risk.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Why rock the boat? Hitting your body with antibiotics that you don't need just to see if you react could do more harm than good. If you do react, then what? Doesn't mean it was a herx, could just be your body reacting to the antibiotic itself. You would also be hitting your gut hard, which it sounds like you have tried to heal.
Posts: 1748 | From United States | Registered: Dec 2011
| IP: Logged |
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Thank you everyone for putting ideas to my conundrum.
Ellen, the only reason to rock the boat is I do seem to feel better on abx, at least for a time.
Judie. Thanks for the links and understanding
Tutu, always sage advice.
Greta, my Canadian sister, thanks for your perspective.
Surprise, I only tried wobezyme early on with everything else I was trying... So the cost/amount of pills was a turn off... Maybe I should give it a shot now.
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
I wrote a whole thank you to all of you specifically by name... But somehow it didn't post!
So let me just say thank you to all my brothers and sisters from other states and countries! I love all the info and care on this site.
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
posted
My LLMD has PROMISED me I will get well. He has had wonderful results with my husband who is now nearly pain free.
I cannot handle NSAIDS either. But he found one that is new onthe market. Zorvolex. It does not dissolve in your stomach. It has very fine particles that go right into your bloodstream. My husband loves it and gave his Ultram to me!
I am leery but am starting it today and will report back.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
| IP: Logged |
Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Please keep us posted on the zorvolex faraday.
Got a love a llmd who promises you results!
Posts: 1728 | From USA | Registered: May 2011
| IP: Logged |
posted
Kudzu, when I had bad symptoms last summer, I took turmeric(curcumin) and Kyolic garlic, and Resveratrol(from Jap. Knotweed) NOW brand for inflammation.
I had read that if you stop the inflammation from Bb, you stop the symptoms. It worked for me, then I added anti-Bb things like serrapeptase & GSE.
I tried Aleve which worked for me before lyme for inflammation, but it only helped ONE DAY, then nothing.
Sorry you can't take turmeric. Is Zorvolex an anti-inflammatory, or just a pain-killer?
I have read about Tindamax killing all the forms of Bb including intracellular forms. If you want a challenge test, seems like a good choice.
I am taking samento & banderol & artemisinin at present, and my saving grace supp is chlorella for detox. Can you take chlorella?
Posts: 254 | From North Carolina | Registered: Nov 2013
| IP: Logged |
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,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[Wink]](wink.gif)
![[Smile]](smile.gif)
I also work in a young persons business. 
Printer-friendly view of this topic