Topic: Wondering if I'm wasting time. What would you do?
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
So...just restarted my treatment after a 2 week holiday. You can see my drugs below...basically targeting all 3 forms of lyme. So far, so good.
Remaining symptoms are: -Mild, constant tinnitus. Virtually gone in the AM's upon waking. -mild calf twitching. Intermittent (both of them) -Mild, intermittent left foot pain -Mild, intermittent left hand / foot tingling -Very mild, occasional night sweats -occasional vision issues (now rarely) -Occational fatigue (very rarely)
I'm feeling about 95% most days, but just can't seem to clear the ramaining symptoms. I'm so worried about wasting 2 months on this protocol.
I don't really respond to lyme meds very much anymore. Every time I pulse my Flagyl, it's like I"m on nothing. No reaction anymore. Zilch. Doxy does nothing anymore either. We'll see how I do on the Omnicef...I'll give it a month.
The only time I feel like I herx is when I'm going after Bart. I felt fatigued and like crap after stopping Levaquin (took it for 2 weeks.) I herxed big time when I started Rifampin, but had to stop due to high liver counts.
I had my biggest herx of all when I was on Biaxin, Rifabutin (Mycobutin), and Bactrim DS. Actually had to take a stick day and had a flare of old symptoms, but had to stop this due to low WBC counts and then broke out in an allergic rash (assuming from Bactrim.)
So..it seems nothing happens anymore on lyme meds. But...I flare / herx the most when on Rifampin, Rifabutin and/ or Levaquin...Bart drugs. Also, I don't seem to relapse when I stop them.
What do you think? All of my remaining symtoms could be lyme or Bart. What would you do? Push for Bart treament or stay on lyme?
I just want to be done and don't want to waste any more time. So close to the end...yet so far. Worried I'm going down the wrong patch.
My LLMD says we may try Factive in Feb.
Thanks for your opinions.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
I would try to do a protocol that did both.
Maybe you can switch out the Flagyl for a bart drug and keep the rest.
I am not sure even LLMD's can say with any certainty what infection is causing what symptoms so I think covering more than one is the best approach.
Posts: 984 | From US | Registered: Dec 2007
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
These are what came to my mind. Things to check into if you haven't already: --magnesium supplements --milk thistle and lemon water, for ears --potassium for muscle cramps, just eat a banana once a day Have you ever treated for Babs?
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
When I was finished with Lyme treatment, I needed some chiropractic work to take care of my shoulder and hip pain. It took the chiropractor and pilates to rebuild the left side of my body to be even with the right. I was twisted due to the weakness on my left side.
My shoulder pain cleared with this "treatment."
My point is, some of the symptoms can be from things that are a results of having been sick.
If you get results from bart treatment, I would take that into consideration. Also, maybe some of your symptoms are a result of needing to detoxify.
Also consider mineral deficiencies as mentioned above.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
I have been on factive with tindamax for a couple months and do believe it is working on borrelia and bart, as my doc said some study said that it would. I recently added ketek for intracellular and that is helping a lot as well, these combinations are working pretty well for me.
Posts: 1927 | From se usa | Registered: Mar 2010
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Thanks all...I should mention the last time I was treating Bart I also got what seemed to be Bart "dots"
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
You don't mention any herbals. My daughter and I have been on Bar-1 from Healthy Directions, Inc. for Bartonella for several months.
My daughter is almost well, but has a few symptoms left that the LLMD/LLND attribute to Bart and cyst form/Lyme. She is going to do the Deseret Biologicals homeopathic Bartonella Series. We were told it would "kick her butt" so we are waiting until she finishes up some important school work.
She can't tolerate Rifampin, but did take Factive for a few weeks. Bad Rifampin herx, but no Factive herx.
If you do end up on Factive, I got it in generic form from a Canadian pharmacy for much less, if you're doc is okay with that.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Have you addressed any type of mineral deficiency? In particular, Magnesium deficiency? Have you had a RBC (Red Blood Cell) Magnesium level taken?
Your first several symptoms could very well be from mag deficiency, and no amount of antibiotics is going to fix that. Nor will oral supplements. You need to fix the deficiency at the cellular level, which means IV. And if you are low in Vit D25, you need to address this too, as you need D to process Mag.
You could, like me, also be stuck with tinnitus. My ears have been ringing for more than a decade. They rang during treatment, and they continue to ring 6 yrs after I stopped abx. The damage is permanent - I could have stayed on abx for 20 yrs - the damage is done, but the rest of me is better.
My point is - not everything is Lyme & cos. Often, we are left with other messes to fix either as a result of the infections, or even as a result of the abx/other meds we have taken. Just food for thought.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
i've had my magnesium levels tested and they were normal. Never had RBC Magnesium. I take 4 Mag-Tab SR's / day.
I realize I may be stuck with the tinnitus / floaters. That's okay.
But the calf twitching, foot pain, and intermittent tingling are not things I had pre lyme. (neither was the tinnitus, BTW)
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Detox for the ears. Mine ring when I forget to take Milk Thistle. Also, I've gained weight which can be attributable to a sluggish liver, so obviously I'm not detoxing enough. If you've also gained weight for no reason, then that could be a sign that you liver needs some tender care.
I've had tingling for years, haven't had it much lately. Not sure why/when it went away, but I supplement a lot of stuff. I read Dr. B's guidelines and picked what I thought was needed. I also started eating a handful of brazil nuts everyday in addition to using iodized sea salt. Body needs both selenium and iodide. Bananas help me with calf cramps.
Good luck.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
@bcb1200 What are Bart "dots"
Posts: 133 | From Philly/NJ | Registered: Nov 2009
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Serum magnesium level testing is not an accurate reflection of what is going on in your cells. And taking oral magnesium when you are low will not get you back to normal. (I was still low despite taking 50mg 8 times a day for over a year.) Couple of IV's and weekly IM shots put me in normal range.
RBC Mag level is the best chance for an accurate read.
Again, just food for thought for you and our newer members.
Where the heck is Marnie nowadays? Seems her years of research on the subject has long been forgotten.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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