posted
I think I may have set myself back due to foolish indulgence. In May I finished 6 months of IV rocephin. Dr want to take me off and see how I was doing in 3 months. I was feeling better then I had in years. The symptoms were still there but not too bad. I had defenitely made progress. Monday was my birthday. I went to see a movie. After the movie I felt a little off. I never go to movies. That night I treated myself to a coffee and a couple slices of cake. I have been pretty much sugar free for a few years now. The next day I started getting symptoms that were not typical of the ones I usually have. I'm mostly neuro. My arms felt weak. I feel like my skin is crawling. I get pinpricks on my arms and legs. My knees ache a little. My head isn't right and the hot sun makes me feel itchy. I woke up with extreme anxiety. I think I have fed the bugs and caused a flare up but the symptoms I have are MS like and I'm worried that this long term lyme may have finally turned to MS.
I hope its just a flare up caused by my stupidity.
-------------------- Neuro symptoms since 1995. Dx'd Bart in 10-09. Biaxin/Tindamax 10-10 thru 2-11 Factive 3-11 thru 5-11 Factive/ Rifampin 9-11 thru 11-11 IV Rocephin/ Tindamaz. 11-11 thru 1-12/ IV Rocephin/ Flagyl / Factive 1-12 thru present Posts: 69 | From Florida | Registered: Dec 2009
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Happy B-day Tgyn, I would stay away from the sugar and see how you feel in a few more days, I think you woke-up the bugs.
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Happy belated Birthday!
Now, I don't understand why your doc wanted to take you off of IV when your symptoms "were still there but not too bad"!
The standard of care for long-term IV treatment is to treat until symptoms are GONE, and then treat for two more months.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Happy Birthday Tgym!
You could ask for some diflucan but I'm not convinced that a little cake would make you so sick with those neuro symptoms. Sounds more like the excitement and stress on the body (even though it was good stress) and fatigue caused maybe Lyme or a coinfection to flare.
You may want to call your doctor for an appt as soon as possible to discuss everything that's happened. Sounds like you need to get back on antibiotics so that you don't lose all the good progress that you've made.
Glad you had fun on your birthday Please, stay well!
Posts: 5237 | From here | Registered: Nov 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I think your nervous system - and adrenal system - got way overstimulated from the movie, coffee and cake. Each of those, even in a small dose, could wire anyone who is not used to that infusion of visual & auditory excitement and the treats.
Gluten could also be harsh hammer here if you've been gluten free throughout treatment.
I will add that I sure hope it was all delicious fun.
Now, I wonder if you are on supportive herbs or other nutritional supplements. If not, that would sure be my recommendation for transition or waiting periods.
You may need better myelin and mitochondrial support, along with adrenal support, etc.
Supportive supplements - today - but also do call your LLMD as others suggest. I also wonder why treatment stopped cold turkey before symptoms had been clear for a couple months.
Good luck. Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Topic: To everyone with cardiac symptoms please read !
CARDIAC Explanations & ENERGY SUPPORT, helping the MITOCHONDRIA and MYELIN sheath. Near the end of the thread, see detail for Terry Wahls, M.D. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Well the movie (Spiderman) was good, the coffee was good,and the cake was good, but certainly not worth the payback. Hopefully this onslaught will be over in a few days.
I don't normally freak out about feeling crappy, I've been at this so long that a bad day is just a walk in the park. After all do any of us remember what good days are like. This time I really got thrown for a loop. The symptoms are bad and different from the norm.
I was on Rocephin for 6 months twice a day. That was the longest he had ever put anyone on for. Plus I was doing orals for a year before that. He was monitering my CD 57 and saw that the last month on ABX it went from 50 to 59. He took me off to put me on an antifungal for a month and a half, then wait another month to check my CD 57 again to see if it is still going up. I'm going get the CD 57 in about a week and see him in mid August
-------------------- Neuro symptoms since 1995. Dx'd Bart in 10-09. Biaxin/Tindamax 10-10 thru 2-11 Factive 3-11 thru 5-11 Factive/ Rifampin 9-11 thru 11-11 IV Rocephin/ Tindamaz. 11-11 thru 1-12/ IV Rocephin/ Flagyl / Factive 1-12 thru present Posts: 69 | From Florida | Registered: Dec 2009
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posted
No I didnt realize I still needed to be on probiotic after abx.
-------------------- Neuro symptoms since 1995. Dx'd Bart in 10-09. Biaxin/Tindamax 10-10 thru 2-11 Factive 3-11 thru 5-11 Factive/ Rifampin 9-11 thru 11-11 IV Rocephin/ Tindamaz. 11-11 thru 1-12/ IV Rocephin/ Flagyl / Factive 1-12 thru present Posts: 69 | From Florida | Registered: Dec 2009
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Olive leaf extract really helps my yeast.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Certain brands of OLE has also been a miracle for candida in my experience. OLE has many wonderful properties that may be just great for this transition period, too.
PROBIOTICS still required. Time away from both Rx and supplements. Probiotics for life, really. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by Tgym: No I didnt realize I still needed to be on probiotic after abx.
- It can take years for your gut to return to "normal" after years of taking antibiotics. You really should get on some ASAP.
Now after hitting it with sugar, you've "fallen off the wagon."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
All of my neuro symptoms are way way down from doing parasite treatment. Your symptoms sounded like mine, plus I had more. I would strongly suggest looking into it.
Happy Birthday, btw! Posts: 2238 | From East Coast | Registered: Jul 2010
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Happy birthday! Yes, it sounds like yeast and parasites (the two go hand in hand). We are close to a full moon too (I have been getting signs).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
OK IV 2x day for 6 months is a pretty good dose, but unfortunately your body was under stress from it. Too bad. Another couple of months might have done the trick for you.
I agree with others here though that you SHOULD be taking Probiotics! Bet that has a lot to do with why you felt lousy after the cake.
Hope you will feel better soon!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
Back on probiotics and staying on. This morning the symptoms were still there so I took a Fluconazole. A few hours later I was feeling a bit better, so I am thinking this may have been caused by yeast.
-------------------- Neuro symptoms since 1995. Dx'd Bart in 10-09. Biaxin/Tindamax 10-10 thru 2-11 Factive 3-11 thru 5-11 Factive/ Rifampin 9-11 thru 11-11 IV Rocephin/ Tindamaz. 11-11 thru 1-12/ IV Rocephin/ Flagyl / Factive 1-12 thru present Posts: 69 | From Florida | Registered: Dec 2009
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posted
You did not say if you were on flagyl while on the Rocephin -- if not then you probably put the lyme into cystic form and did not do much else.
Hubby has been there and made that mistake. In 2010 he did 6 months of IV Rocephin and the last 4 months added IV Zithromax. Was on Tindamax pretty much the entire time.
Then he stopped the IV's and moved on to treating babesia. After the 6 months of IV he felt the best he had in the entire 10 years he had been sick.
But now he is back on IV Rocephin and IV Zithromax plus many more meds and feeling the worst he has in years. Low grade meningitis or ecephalitis type symptoms -- headaches, stiff neck, dizziness and babesia attacks which involve sweats and whole body tremors/dystonia.
He has been on oral Flagyl for many months, but pulsing in IV landed him in the ER recently. Now that I have IV Ativan at home for emergencies I am hoping to keep him out of the ER.
I am really not sure what we are going to do next with hubby if the babesia attacks continue -- the options are shrinking. Next up is adding in IV clindamycin which hopefully will help with both lyme and babesia.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Siebert -
Funny ... I was under the impression that IV Rocephin was such a kick butt treatment that docs don't need to worry about cystic form - because Bb dies rather than just gets "teased" into morphing.
I find this statement of yours a revelation:
"After the 6 months of IV he felt the best he had in the entire 10 years he had been sick."
So I have to wonder, how might your husband have felt today if he had been given ANOTHER SIX MONTHS of IV?? Just as Dr. S's latest 2011 study indicates that neuro patients NEED to be well again?
And please think about this -
Would your doc be likely to try to treat Syphilis with 2 weeks of doxy?
Or, if you were shown to have "drug resistant" Tuberculosis - would the hospital discharge you with a script for Vicks Vapo-Rub?
Not likely!
Dr. H says he gets 95% of his patients well.
That's NINETY FIVE PERCENT!
So what are these other LLMDs doing - or not doing - that keeps people in limbo between illness and health for so long?? My guess? They're HALF-STEPPING with the abx!
(And who can blame them with the IDSA and every health insurer in the country looking to pull their licenses if they run up more than a $100 charge for antibiotics?!)
Go back to the film "Under Our Skin" and review the segments that talk about this!
Sometimes, when I see people pursuing the herbal/wholistic route exclusively, and yet they wonder aloud why they're just not gettng well? It reminds me of Vicks.
Life is too short to screw around.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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