I had treatment 3 times with IV Rocephin and ever sense the second treatment I have been getting progressive nausea and diarrhea. I mentioned this to my LLMD at today's treatment and he said he needs to take me off and he then prescribed Amoxicillin, Flagyl and Florastor.
I have Neurological problems and was diagnosed with MS prior to getting the Lyme diagnosis (positive western blot). I do have lessions in brain and back, still very function, run and work etc...
Is this treatment enough to cure me?
Quix from medhelp states I need IV antibiotics and this downgrade of treatment may very well not reach my brain and that I should find someone else to get another opinion from aside from this LLMD.
If anybody knows about this and can help me, please let me know.
Thanks,
Rob
Posts: 40 | From Michigan | Registered: Aug 2007
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posted
I had Neurological symptoms since March 07, then was diagnosed with MS in begining of June 07 and had steroid treatments. Then I was diagnosed with Lyme disease(positive western blot) 2 weeks ago and only had 3 days of the IV Rocephin which caused progressive nausea and diarrhea. Then treatment was changed.
I do have lessions in brain and back, this is why I am concerned about the BBB thing. I do not know when was bitten but did have unusual rash on back of neck last year and then on chest this year. I do not know if I would be early, middle or late stage lyme.
My choices are very limited as there are only 2 LLMDs in Michigan and the one I am seeing is covered by my insurance. The other is across the state and does not except insurance.
I do still have a Neurologist and I am not sure if they know or will treat Lyme, but I guess I could ask.
I do also take Nystatin for Candida. The Florastor I am taking is probiotic.
As you can see I am very new to all this and just want to make sure I am doing the right things. I have spent a lot of money with copays deductables out of pockets costs etc... I really need to have my insurance work for me.
Thanks for any advice, help etc...
Rob
Posts: 40 | From Michigan | Registered: Aug 2007
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posted
My understanding is that Amoxy in high enough doses will cross the BBB. I also have neuro-Lyme and amoxy is what we're using. I take it with Probenecid to keep the levels high in my blood. I also had a peak level test to be sure I had enough of it in my blood stream.
I am taking 2500 mg three times daily with Probenecid each dose. I weigh about 125 pounds. I had to work up to this dosage.
Different people have better results on different treatments. You can always start on orals and if it doesn't do what it needs to do, switch to IV later. My LLMD is saying that if we don't see more results cognitively by Jan. we'll be looking at IV for me then ... that will be after a year of orals.
Keep in mind, I've had this for 35 years.
I have just been diagnosed with Bartonella, which can also cause neuro symptoms. We're helping that treating the Bart will help. Bart can also cause GI symptoms, which have been a problem for me since before treatments started.
Stick with the LLMD ... you want someone experienced in treating Lyme Disease. These guys are dedicated ... I left a message at my LLMD's office yesterday ... he called me back at ten till 8 ... apparently he's sacrificing his life so people like us can have one. That's a true doctor.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I forgort all about the dosage sixgoofykids, Thanks!
My dosages are: Amoxicillin 1000MG twice daily. Flagyl 500MG twice daily. Florastor 250MG twicw daily. I weigh 185 lbs and just started on this Thursday 9/20/07.
Please let me know any thoughts.
Thanks,
Rob
Posts: 40 | From Michigan | Registered: Aug 2007
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posted
Quix is from the medhelp forum and has helped me a lot through my MS and Lyme problems. I do need to broaden my investigating at this point and get more information and opinions.
Please let me know any advice, opinions, experiences, etc... etc...
Thanks,
Rob
Posts: 40 | From Michigan | Registered: Aug 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
That dose of amoxy is fairly low for neurolyme in my opinion. I had untreated lyme for many years, and after starting tx last year, worked up to 10.5g amoxy/day. I weigh about 135 lbs.
Took this much for several months, and was on a lower amount about 8g/day (split into morning and evening) for months before that. Stopped amoxy after one year and started bicillin shots (2x 1.2M/week) and minocycline, 200mg/every 2 days. Along with plaquenil as cyst-buster.
Also important to take lots of probiotics during the day while on amoxy. Be sure to follow the yeast-free diet, search for Tutu's old posts on that. Florastor is great but should not be your only probiotic, it does not contain acidopholis and other beneficial bacteria (florastor is a beneficial yeast I think).
Are you seeing an llmd? That is essential to getting proper treatment. Best wishes.
Posts: 2557 | From home | Registered: Aug 2006
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tailz
Unregistered
posted
Personally I think when you kill one bug off, another one is happy - it has more food.
My diarrhea cleared up after starting minocycline/Larium, but when I stopped them due to pain, the diarrhea returned. Actually, it was usually more like big, bulky, soft stools that, with my small size even, challenged my plumbing (and probably my neighbor's).
Of course, I attempted to restart the minocycline in an effort to get control of the big, bulky, soft stools. It did nothing though this time. I guess it's possible the Larium was what helped my GI symptoms, but Larium made me psycho, and I could swear the mino alone had helped my GI symptoms initially at least.
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posted
I agree with Vermont, that dosage is low. I am up to 7.5 g per day and as I said, I'm taking Probenecid with it.
Check out Theralac and Ultra Flora for probiotics to take along with what you're taking now.
It's good to get ideas from a message board, but I wouldn't base your treatment on what any one person says ... you need to be going to an LLMD who you trust to make you better and follow his recommendations. You want to be educated so you can participate in the decisions, but you want to rely on their experience to do the guiding.
You can reach the brain with orals. I would suggest talking to your LLMD about a higher dosage (maybe doing a peak test) and taking Probenecid with it to keep it in your bloodstream longer.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
This doctor I am with now is a Lyme Literate Doctor and is the one that diagnosed me with Lyme Disease and the treatment is what he put me on.
Just wondering at this point why my meds and dosage are so different from others?
Any questions you think I can/should ask my Doctor.
I do feel good about this doctor. He is very nice and gives alot of information as he had me get a digital recorder so I could record everything he said at my appointments.
Thanks,
Rob
Posts: 40 | From Michigan | Registered: Aug 2007
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frakktured1
Unregistered
posted
there could be reasons why your llmd is trying you at a lower dose...
Perhaps he has his own graph for treating certain strains of disease in correlation to just how much is sufficient to erradicate each specific bug.
This way he could eventually avoid highter doses in people in the future. Saving higher doses for if and when they are absolutely necessary.
I mean, we don't want EVERYBODY walking around with possible side effects due to results of having had too much of one thing or another leaving them...well..you know!
Somewhat impaired, if it isn't totally necessary.
If say 1000mgs of abx x is sufficient and given in a type of way(perhaps pulsing, as in flagyl) that maximizes efficacy against strain X(or a
form it can mutate into like cysts) yet minimizes exposure to the patient.
I think in this way science can start to develope regimens of specific treatments, instead of "shotgunning" abx into their patients.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I don't know your history or details.. but from what you have shared here.. my thought is the doctor's protocol should be fine.
MANY people don't have a full or adequate response to Rocephin. Some folks have no response to it. As long as your doctor is moving forward and trying to find the best combo for you... I think you are very lucky.
The lower doses.. especially when mixed with other antibiotics can be fine and even preferred. MORE doesn't always mean better.
Remember.. herxes can kill.. and caution is always advised.. and you need to see how YOU will react to the meds before getting more or going overboard. Length of time infected, history, coinfections, individual body design, age, immune system functioning and things like steroid use all need to be factored into what YOUR protocol will be.
You said.. "Is this treatment enough to cure me?"
No one has that answer... not even the best of the best LLMD's. If you have been misdaignosed for a good while, had steroids, and have the damage and symptoms you shared with us.. it would be impossible to say for sure what will work to help knock out some of the infection.
Sorry to say it is trial and error.. with educated guesses and experience tossed in there.
But.. what I can say is chances are you can be stopping or slowing the diseases progression and possibly get to feeling much better with the right protocol.
"Successful control and elminiation of a Candida Albicans overgrowth requires a multifaceted program as described below. Failure to follow ALL the steps simultaneously will result in slow progress and will lengthen healing time significantly. The program should be tailored to the individual and must balance the need to eliminate the Candida and deprive it of its food source while insuring proper nutrition for the individual."
Five Steps to Candida Elimination:
1. You must starve it into submission by eliminating its food source.
2. You must kill it with anti-fungal herbs and supplements. [e.g....garlic, onion, caprylic acid, Pau D'Arco capsules or tea, clove, grapefruit seed extract, olive leaf extract, oil of oregano, tea tree oil, Echinacea, Goldenseal, black walnut, MSM, barberry root, uva ursi, neem leaf, biotin]
3. You must reestablish the proper balance and quantity of probiotic bacteria in the digestive tract. [...multi-strain lactobacillus acidophilus and bifidus capsules with FOS should be taken between meals to maximize repopulation of the digestive tract by beneficial bacteria.]
4. You must reestablish proper levels of all B vitamins (yeast free) and utilize other immune enhancing supplements to boost immune system function. [e.g ... B complex vitamins (yeast free), biotin, beta 1-3 glucan, colostrum, maitake mushroom, vitamins A, C, E, zinc and selenium]
5. You must cleanse and heal the digestive tract to promote proper elimination of toxins and Candida and assimilation of nutrients. [e.g...chlorophyll, MSM, omega 3 fatty acids found in flax seed and salmon oils, GLA found in borage, evening primrose and black currant oils. Pantothenic acid, digestive enzymes between meals]
posted
Check out C. Difficile. 3 doses of Rocephin sounds too soon to develop C Dif but Flagyl is the cure. Works for cysts too of course.
Rocephin is very wide spectrum... a shotgun antibiotic. If the ER doc is not fairly certain of the bacteria involved they use Rocephin and let the admitting doctor sort it out. Rocephin crosses the blood brain barrier very well though so it is good for Neuro Borreliosis.
Posts: 70 | From AZ | Registered: Sep 2007
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
My knowledge of the various orals is somewhat limited as I have only used two, Zithromax and Biaxin. In addition, I have taken Bicillin LA injections throughout. The Bicillin/Biaxin combination has worked well for a lot of people, although Biaxin is more irritating to the gut than Zithromax. Bicillin generally does not bother the gut at all and, in general, is very well tolerated s long as you can hand the shots. While you are trying to sort this out, you might search Bicillin using the "Search" function at the top of the page. It seems to me that people are more consistently positive about it than about any other medication.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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