Hi everyone. As many of you know, I've been treating for about 8 months now. I was bitten in the latter part of July [early August] of '07, and started treatment 4 months after the bite. After about 5 months of a combination of Doryx [400 mg.] and Biaxin [1000 mg.], I've been on a combination of Rifampin [600 mg] and Doryx [300 mg.]. During the entire treatment time, I have not noted any worsening or improvement of my symptoms. I have also not noted any herxing or reaction to any meds or supplements. My worst symptoms are muscle twitchings, light-headed feeling, and some fullness in the ears.
I was switched off of the prior combination in favor of the new, due to the results that came back from Fry, showing I had a hemobartonella or mycoplasma organism. The new treatment of Rifampin/Doryx, has been in place for a tad longer than one month now.
Some of the supplements I've tried with abx treatment are Samento, Cumanda, Co-Enzyme Q-10, Garlic, Magnesium, Omega 3 Fish Oil, etc.
I have two questions.....1) Is there anything out there that I haven't tried already, that would alleviate the muscle twitches [seems to be the most predominant symptom]; and 2) How long should I continue to treat, before assuming that my problem(s) is/are not Lyme related?
I am currently seeing an LLMD, and he will probably answer question #2 on my next visit, but I was just looking for suggestions. I certainly don't want to stop treating, if this is Lyme and co-infections; however, I don't want to stay on abx for longer than a year or so, if they don't seem to be doing anything.
Posted by bettyg (Member # 6147) on :
craig, i'm breaking this up; looks others like me who could NOT COMPREHEND/READ IT SOB/scrolled on by too.
please do this in future on all posts/replies; you'll get readers/repliers then ok.
quote:Originally posted by CraigC:
Hi everyone. As many of you know, I've been treating for about 8 months now.
I was bitten in the latter part of July [early August] of '07, and started treatment 4 months after the bite.
After about 5 months of a combination of Doryx [400 mg.] and Biaxin [1000 mg.], I've been on a combination of Rifampin [600 mg] and Doryx [300 mg.].
During the entire treatment time, I have not noted any worsening or improvement of my symptoms.
I have also not noted any herxing or reaction to any meds or supplements.
My worst symptoms are muscle twitchings, light-headed feeling, and some fullness in the ears.
I was switched off of the prior combination in favor of the new, due to the results that came back from Fry, showing I had a hemobartonella or mycoplasma organism. ***************************************
The new treatment of Rifampin/Doryx, has been in place for a tad longer than one month now.
Some of the supplements I've tried with abx treatment are Samento, Cumanda, Co-Enzyme Q-10, Garlic, Magnesium, Omega 3 Fish Oil, etc.
I have two questions.....
1) Is there anything out there that I haven't tried already, that would alleviate the muscle twitches [seems to be the most predominant symptom]; and
2) How long should I continue to treat, before assuming that my problem(s) is/are not Lyme related?
I am currently seeing an LLMD, and he will probably answer question #2 on my next visit, but I was just looking for suggestions.
I certainly don't want to stop treating, if this is Lyme and co-infections; however, I don't want to stay on abx for longer than a year or so, if they don't seem to be doing anything.
my non-medical opinion is your muscle twitching is a HERX from some of the meds you are on.
you need to give these TIME TO WORK; not switching things around constantly...
i've not been on many things you are on; can't comment.
but i started herxing at beginning of my abx/ antibiotics; my right arm felt like a punching bag and was like that for 20 months while i was on abx!
taking this to the top so hopefully you can get some answers.
Posted by groovy2 (Member # 6304) on :
Hi craig
Did you see Bullseye ??
Were you tested for Babs ??
How positive was your Bart test?
Personally my jerks -twitching and brain fog stopped after being treated for both Lyme and Babs together -
Im perty sure that Babs is what caused these symptoms in me -
Usually after a person has been treated for as long as you have Some Change symptoms happen -
So maybe you have another co infection -
Untreated Co infections can really slow down progress - especially Babs -
I would give more time to the combo that you just started--
sometimes a month is not enough time to show progress or change if your germ load is high -
Hope this helps--Jay--
Posted by CraigC (Member # 13732) on :
Well, after 5-6 months of Biaxin/Doryx, my former practioner and I felt it was time to change up things, since I didn't seem to be getting any results from the prior combo. Hence, she and I talked about Rifampin/Doryx, since my Fry blood smear showed a moderate level of Hemobartonella/Mycoplasma organisms. All other co-infection tests through Fry, came back negative.
I realize that only 1 month on my present combination isn't long, but you would think that I would have had some sort of reaction to the abx. As it stands, neither combination has proved effective in ridding myself of these symptoms. I plan to continue on, but it seemed strange to me that after 8 mos., there hasn't been much in terms of herxing/improvements.
If the muscle twitches were a reaction to the medication I'm taking, how is it that I was twitching like this before starting the abx treatment? And no, I never saw a bullseye rash.
Posted by northstar (Member # 7911) on :
To add to the confusion: From what I have read on LN, the bart/blo treatment success is variable.
Some have no help with rif/doxy, but have had success with rif/zithro.
Some have had no success with either, yet have had success with levaquin or cipro, and others have disastrous consequences of these last ones.
So there are 2 problems: Is the organism you targeted being treated with the most effective combo.
Has an unknown factor caused the symptoms.
Symptoms: brain fog, ear pressure (which to me sounds like some fluid pressure in the brain, or inflammation of some kind)
muscle twitching
Two more possible solutions:
treating possible fungal infection with herbals. I think some are doing garlic, olive leaf extract, or oregano, or grapefruit seed extract. These also may hit an unknown pathogen.
Also, lymph drainage can help alleviate the brain pressure, since there can be back up of fluids and toxins/pathogens if the full lymph system is not kept flushed and draining.
How this is accomplished depends on what the problem is. Sometimes several strategies are used. There is much on past postings on how to approach lymph drainage, whether mechanical (body work, exercise) or with supplements, such as homeopathy or herbs.
Twitching: I have read that the B 12 needs to be taken along with a full spectrum B, in order to counterract a potentially damaging or ineffectual imbalance.
I apply the same reasoning to adding an individual mineral. Thus I take full mineral complex along with my extra magnesium.
Hope there are some ideas here.
Northstar
Posted by CraigC (Member # 13732) on :
Thanks Northstar. I don't know the answer to the combo question, but I guess this is something that will be revealed in time. I'm seeing Dr. J in SC, so perhaps he will make some recommendations during my appt on August 22nd.
As for supplements, I am currently taking B-12 and Garlic, in addition to Magnesium. However, I'm not taking any of the others you've mentioned.
I've certainly found that this is as big of a mystery to the "experts", as it is to me. It just gets so frustrating to be on all of these meds/supplements, and not have much in terms of relief from the symptoms.
Posted by Lymeorsomething (Member # 16359) on :
Craig, it's also good to know your thyroid/adrenal status. Thyroid issues can sometimes cause "twitching" symptoms.
Lyme throws off hormone levels so it's good to have an idea where everything stands.
Posted by CraigC (Member # 13732) on :
Lymeorsomething,
I have had the typical Thyroid blood tests recently, but they all came back in the normal range. I do have a history of Thyroid nodules, which lead to a partial Thyroidectomy back in '85. However, as far as I know, my levels have always checked out alright, and I have never been diagnosed with Hyper/Hypo issues.
Thanks for the information however, as that does give me something to ponder.
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