Lyme Treatments

 

This is a listing of the treatments that I have taken for Lyme. I have seen two doctors and hence the division in the sheet.  I am doing much better, but as I post this on March 20, 2012 I am not all better.  At the same time I am also not actively pursuing treatments.  I am hanging in a long state of limbo.

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Drug Dosage Frequency Start Date End Date Comments

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IV Rocephin 2g QD 6/5/2007 7/2/2007

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Tindamax 500mg BID 6/21/2007 7/12/2007 Anti-protozoa 1 pill 1st day. Think targeting cyst form

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Ursodiol 300mg QD 6/26/2007 7/2/2007 Prevent
Bile sludge when taking Rocephin. Should have been taken all along?
Did not get gall stones so I guess all is well. How does taking “bile”
prevent sludge?

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IV Cleocin Phosphate/ Clindamycin 600mg BID 7/2/2007 7/17/2007 Replacement
for Rocephin. Burke said this is the one that really got to him. Does
not cross blood-brain barrier well. Burke started me on a higher dose
than the normal starting dose of 300mg. Will progress to 900mg

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Malarone 250mg BID 7/13/2007 7/28/2007 Anti-parasite.
Intended to target the protozoa Babesia. Last dose was the AM dose. I
am concerned that the medication is resulting in the chronic cough,
eyesight issues, and blood sugar issues. It can also cause sleep issues
which may be why I need the Ambien to go to sleep.

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Ambien CR 12.5mg QD 7/13/2007 10/18/2007 To
help sleep. Seems to be needed more while taking Malarone. Want to
stop but need to wean off. Waiting until anti-seizures are at full
potency before stopping on advice of neuro. Ended to start a lower dose
as part of the weaning off

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IV Cleocin Phosphate/ Clindamycin 900mg BID 7/18/2007 8/8/2007 I
got the impression that the Dr. thought that this crosses the
blood-brain barrier. Every indication that I have seen indicates
otherwise: www.pfizer.com/pfizer/download/uspi_cleocin_phosphate.pdf
Last dose was the morning dose

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Malarone 250mg BID 7/31/2007 8/27/2007 Dr.
said coughing was part of Babesia and normal. And blood sugar was a
result of insulin being released as part of stress on body. Do not know
why Dr. stopped Malarone before 4 months were done.

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Artemisinin 200mg BID 8/6/2007 8/27/2007 OTC treatment for Babesia. Using Nutricology brand. Stopped because I ran out

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IV Levaquin/ Levofloxacin 500mg QD 8/8/2007 8/13/2007 Was told by medical assistant that this was to treat Bartonella

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Azithromycin 500mg QD 8/9/2007 8/26/2007 Was
told by medical assistant that this was to treat Bartonella, and I
think Babesia. This seems consistent with this CANLyme article:
http://www.canlyme.com/coinf.html

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IV Levaquin/ Levofloxacin 750mg QD 8/14/2007 8/21/2007 Bumped
doseage. Dr. did not want to raise to 900mg, probably because of the
toe pain. Said he was absolutely certain it was Gout, but would not
bump until pain went away. Was shorted a bag for a final dose on the
22nd

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Septra DS 800/160 QD 8/27/2007 8/27/2007 Sulfa
drug. Intended to target Bartonella. After bad-reaction (shortness of
breath, etc.) and then seizure did not re-take. I don’t think it
caused seizure (Lavaquin/Ambien Larger Role) the bad reaction freaked me
out, and now carries a ban

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Levaquin/ Levofloxacin 750mg QD 8/27/2007 9/9/2007 Oral
version. Dr. said this was the maximum tolerable for oral consumption.
If is too bad split pill for AM & PM until the body adapts.
Stopped to see if it would help with my stomach and back, plan is to
resume after about a week

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Levaquin/ Levofloxacin 375mg QD 9/19/2007 9/19/2007 Dropping
the dose for 2 weeks post seizure. Doctor wanted 250mg, but talked him
into halfing the 750mg since they were so expensive and had 750’s.
Should switch to 500mg after 2 weeks, but talked about moving to Cipro
since it should be cheaper. Stopped again because too nervous of
side-effects

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Tindamax 250mg QD 9/19/2007 10/6/2007 Breaking
the 500mg pill in half. This is intended to be easy on my body
post-seizure. Per the doctor this is also intended to replace the
effect of the Septra DS. Misread my notes; this was supposed to be BID

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New LLMD New LLMD New LLMD New LLMD New LLMD New LLMD

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Biaxin XL (Clarithromycin) 500mg ER BID 10/10/2007 12/7/2007 Main Lyme treatment? Possibly was taken so Babesia could not to develop resistance to Malarone?

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Malarone 250mg BID 10/10/2007 2/7/2008 For
Babesia. Since there was a break in the treatment I will need to start
the 4 month treatment from scratch. I don’t know why the original LLMD
stopped the Malarone prematurely

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Flagyl (Metronidazole) 250mg TID 3 days per week 10/14/2007 (Resumed on 2/18/2008) 6/28/2009 Replaces
the Tindamax for fighting the cyst form of Lyme. Will be used in a
pulsed fashion. Ramp up with tid for 1 day on week one for 2 days on
week 2 and then on week 3 can do the full 3 days. The 3 day schedule is
consecutive days such as Friday, Saturday, Sunday. Held on 2/12/2008
as part of the all-antibiotic stop because of the eye problems. Resumed
on 2/18/2008 with the blessing on the LLMD because eye problems likely
not antibiotic related. Stopped on 3/17/2008 pre-surgery to give the
body a break. Resumed on 4/7/2008.

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B12 (cyanocobalamin) Injection 3000 mcg 2 days per week 10/13/2007 Prescribed
to give more energy and to fight free-radicals. Cleared to take once a
week if twice a week is no longer necessary. This is an IM injection.

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Ambien CR 6.25 mg QD 10/19/2007 10/25/2007 This is the wean down dose before stopping the Ambien to reduce the likihood of inducing seizures per neurologist

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Diflucan (Fluconazole) 200 mg QD 14 Days then QD Wed & Sun 10/25/2007 (Resumed on 2/18/2008) 6/28/2009 Kill
off the yeast infection that is plaguing me. Repeating this treatment
cycle every month Held on 2/12/2008 as part of the all-antibiotic stop
because of the eye problems. Resumed on 2/18/2008 with the blessing on
the LLMD because eye problems likely not antibiotic related

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Cipro (Ciprofloxacin) 500 mg BID 12/8/2007 (Resumed on 2/18/2008) (Held on 2/12/2008) Done on 5/20/2008 For
Bartonella. Held on 2/12/2008 as part of the all-antibiotic stop
because of the eye problems. Resumed on 2/18/2008 with the blessing on
the LLMD because eye problems likely not antibiotic related. Stopped
on 3/17/2008 pre-surgery to give the body a break. Resumed on 4/7/2008.

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Minocin (Minocycline) 100mg BID 1st week then 1am 2 PM 2/10/2008 (Resumed on 2/18/2008) (Held on 2/11/2008) Done 6/28/2009 Main
Lyme treatment. Stopped treatment after the AM dose on 2/11 because of
visual problems. Do not think anitibiotic related as of 2/15 but have
not resumed because vision has not improved. Resumed on 2/18/2008
with the blessing on the LLMD because eye problems likely not antibiotic
related. Starting Minocin on 2/18/2008 once a day for a week. Plan to
move to BID after a week. Went to twice a day 2/27/2008. Changed to
one in AM and two in PM on 3/5/2008. Stopped on 3/17/2008 pre-surgery
to give the body a break. Resumed on 4/7/2008. Done because of side
effects

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IV Rocephin via MediPort 2g BID 4 days a week 3/24/2008 9/25/2008 Treat Lyme aggressively because of bad MRI and vision problems

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Ursodiol (Actigall) 300mg BID 3/23/2008 9/25/2008 Prevent gall stones from Rocephin. Started a day before Rocephin just to be safe. Still have no clue how this works

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IV Vancomycin via MediPort (selfinfusing) 62.5mg One Dose 4/15/2008 4/15/2008 For positive blood culture for Staph. Infused over an hour (65ml Bag). Probably false positive test

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Cholestyramine 4g/scoop .5 tsp BID 1st week then 1 tsp BID 8/11/2008 6/28/2009 To reduce Lyme toxin levels. Shoemaker protocol?
 Posted by at 4:18 pm

  4 Responses to “Lyme Treatments”

  1. Hi, are you still taking CSM? Thanks for the info/help. Teresa
    Dealing w late stage Lyme/MS

  2. Hi. I am dealing w late stage Lyme/MS problems. Are you still taking CSM? Thanks for the reply/info. Teresa

  3. No I stopped CMS, Cholestyramine, years ago as stated above.

  4. I have Lyme/MS too, so I am interested in the connection. I am in the UK, so reading your experience of the US medical system is both horrifying and envy-making. It is horrifying because of the cost of the drugs you mention, the problems with the co-pay, that it seems to give out at some point and you start having to pay costs in the thousands of dollars? This seems barbaric to someone in a country with a national health service where medical treatment is free at the point of use. The other part of it, the envy-making part, is the range of treatments your doctors have tried you on.

    In UK the treatment options may be free but they are severely limited. You get your 4 weeks oral Doxicycline for Lyme and that’s you considered cured. They won’t talk to you about Lyme after that and if you continue to ask they will question your mental health or simply tell you that chronic Lyme does not exist and can’t survive antibiotic treatment – even the minimal 4 weeks that you get. Bear in mind it takes so long to get diagnosed you are likely to have had Lyme for many years before you get this treatment. I had it already 5 years (based on when I got the tick bite) before getting my positive test. It took a huge amount of fighting with doctors to get them to agree to do a test. They were sure it would be negative. I was almost pleased when it was positive as I thought that at last I’d get help. Turns out I was far too optimistic on that score.

    For MS the picture is not much better, though at least it officially “exists”. If you get diagnosed with the progressive kind there are no disease modifying treatments on offer. For relapsing-remitting MS you may be offered these but you have to fulfill very specific criteria. All I have been offered are drugs to treat the symptoms. These drugs are sedating and so heavy on the system I know they would impair my ability to work. My employer is, on paper, all very sympathetic to disabling health conditions, but in reality not so much, and I would lose my job if my pace of work was negatively affected for longer than a short-term blip. However I would be found fit for work, so ineligible for disability assistance. I am not visibly disabled and can walk more than 20 metres (65 feet), which is the test for mobility based assistance in the UK and you are considered mobile even if you need an aid to walk this short distance. So I need to keep working and that means I can’t take the kinds of drugs offered to treat MS symptoms.

    I think that both US and UK systems of medical care seem to be failing people who have chronic, difficult to treat illnesses like Lyme or MS. In your country a person could go bankrupt paying for the treatments. In my country we would get them for free but they would not be adequate. In both countries the motivation of medics and drug companies are difficult to trust. In your country the drug companies/doctors are surely motivated to promote expensive treatments while the insurance companies are motivated to reject them. In my country the doctors are motivated to reduce cost to the system and the drug companies are motivated to increase it. Nothing works as it is supposed to. Patients suffer in both systems.

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