Lyme Treatment Dilemma

[savagek]

Hi

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?

Do I need IV antibiotics?

Will this downgrade of treatment not reach my brain?

If anybody knows about this and can help me, please let me know.

Thanks,

Rob

[sjm221]

I started having symptoms in Fall 2006.  Basically, woke up one morning and had terrible shortness of breath.  These symptoms persisted and nobody could figure out what was wrong with me.  The more typical lyme symptoms then started to kick in - fatigue, headaches, neck pain, etc.  Accompanied with these, i would have bouts of constipation, followed by severe abdominal pain which would then trigger (or lead to fevers).  These episodes would resolve in 2-3 days.  After battling these symptoms for around 6-7 months and having tons of tests being done (all coming back negative  - was tested for lyme through quest, 3/5 or 4/5 bands were reactive),  i finally decided to get a second opinion and found a LLMD who ran several tests.  Using surrogate markers, combined with Igenex tests, he believed that i did have lyme.  I was mis-treated/misdiagnosed for about 6-7 months.  He started me on tetracyline for 28 days, followed by ceftin and zithromax, and then diflucan and amox (all for 28 days).  I was retested a month ago through Igenex and was positive.

Following the diflucan and amox, i started to become very nauseas , and developed gastritis like symptoms.  I have been off any long term antibiotic treatments for around 5-6 weeks (had to take a z pack for bronchitis), and still continue to battle stomach upset.  Is this the result of taking too many anti-biotics?  I tried using various proton pump inhibitors - and they have been somewhat effective, but don't seem to truly resolve the underlying problem.  I had a endoscopy done - and that revealed very little - they saw minor irritation to the lining of my stomach, but were really not concerned.  That pain went away, but the nausea persisted even while on the proton pump inhibitors.  Since the beginning of my treatment, many of my symptoms have improved - fatigue, headaches, neck pain.  I tried going off all meds for about a week.  My stomach improved slightly ( i guess) but still would have bouts of nausea.  Now, i am on a cyst busting regimen of plaquenil and zithro, and still experience the same symptoms.  I'm thinking about stopping and maybe do nothing for awhile to try and let me stomach heal.  I would like to continue on this regimen because i am showing improvement and don't want to give this bug any freedom. My llmd thinks that these symptoms might actually be caused by lyme.  I don't know.  I am uncomfortable about taking this many anti-biotics and fear that i might be doing more harm then good at this point.

Does anyone have any suggestions for combating the nausea?

Can this be a symptom of lyme?

Or, is this one of the reasons that long term treatment of lyme is discouraged throughout conventional medicine?

Any suggestions or comments would be much appreciated?

[Jenny Wren]

They are both in Hermitage, PA.  Dr S, and Dr J.  

[patsy10]

Yes, there are 2.  Go to lymenet dot org and post under seeking a doctor and you will get their names.

[mariop]

Are there any lyme doctors in Western PA, near Pittsburgh
Thanks.

[savagek]

Hi Carol,

Yes, that is right I had only three days of IV Rocephin. Thank you for clearing that up as I had no idea.

Rob

[Carol in PA]

Rob,
I think you are confusing some people by saying that you've had "three treatments of Rocephin"...they think you've had a full course of treatment.
A full course of treatment would be three to four weeks worth of daily infusions.  You've had IV antibiotics for only three days, is that right.
Carol

[sojourner1]

For one thing, I think lyme treatment is very individual and it really depends on your response.

Some oral medications have excellent penetration across the BBB and into the CNS. Flagyl is a good example. Some drugs do not pass at lower levels but at higher levels they do--like amox.

IV is a standard treatment for neuro-lyme yet even that alone has proved imperfect so it surely isn't a magic bullet.......for everyone.

Finally, just because your doc has stopped your IV treatment now does not mean he won't attempt this treatment later.....I'd take a deep breath now.

[patsy10]

I think you do need IV treatment.  The oral meds just don't cross into the central nervous system very well.  Others may disagree with me but I really don't think late stage lyme is curable.  I think it can lessen or go into remission but I think it returns  at some point.