Any advice/recommendations

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Regular Member

Date Joined Dec 2008
Total Posts : 51
   Posted 2/18/2009 1:28 PM (GMT -6)   

I went to see another lyme specialist in my area (I was already being treated by one). After undergoing another MRI and spinal tap, I am waiting to undergo a new treatment. I had been on 6 weeks rosephrin, 3 weeks biaxin prior to that, two weeks bicillin, 7 weeks doxycycline. Which the stronger treatments, I was gettting in constant increase of symptoms and felt increasingly more weak. My symptoms have always been neurological (numbness, tingling, vibrating tingling, muscle twitches/fasiculations. These have escalated to the point where I am being treated for neuropathy. I have never had any chronic fatigue or fibromyalgia type of pain. My MRI came back clean, my spinal came back negative for lyme and coinfections and a slightly elevated fluid level which is a marker for MS, but also lyme I was told. I should add that my lyme doctor looked at the results and noted that they were not sent to the lab she requested (Igenex) so therefore blew off the negative results. I had a positive Western Blot Igm blood test from Igenex last summer. So after undergoing a second "ruling out", she came back to the diagnosis of serious neurological lyme. She wants to calm my system down with Neuronton before starting low dose IV of Rosephrin, Zithromax and Flagyl for 5 months with a line from my arm into my heart being surgically put in, not a port. She thinks my body will respond better to low dose, longer term.

I am now wondering if I should do this at thousands of dollars/week when there is no guarantee that it will work. Any thoughts, suggestions?

Regular Member

Date Joined Dec 2008
Total Posts : 51
   Posted 2/18/2009 1:37 PM (GMT -6)   
Oh, and one more thing. . . I have had constant and overwhelming anxiety along with depression since this started. I am reading more about bartonella and depression/anxiety. However last fall I tested negative for co-infections from Igenex.

Regular Member

Date Joined Jan 2009
Total Posts : 296
   Posted 2/18/2009 1:48 PM (GMT -6)   
Lyme disease can also cause anxiety and depression and all sorts of moodiness. I had to go off of all my medications for a couple of weeks due to what was probably food poisoning. My mood swings came back quickly and hard. I've gradually started back on some of my medications, and I just recently started Omnicef. The last couple of days, my mood swings seem to have calmed down a lot. It's too early to tell if it will stay that way, but I'm hopeful.

Veteran Member

Date Joined Oct 2007
Total Posts : 1172
   Posted 2/18/2009 2:17 PM (GMT -6)   
I also suffer from neuropothy in my hands and feet. My Dr. just put me on neurotin for that. I have not been taking it lately though because something is agrivating my nervous system and i'm trying to figure out what it is.
I have been on IV rocephin for 6 mos.

Veteran Member

Date Joined Aug 2007
Total Posts : 4415
   Posted 2/18/2009 6:16 PM (GMT -6)   
The co-infection tests are as inaccurate (or even more inaccurate) as the Lyme tests, so a negative test result for coinfectoins by itself does not rule out co-infections.
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), IV Cipro (for G-tube site infection).

Veteran Member

Date Joined Feb 2003
Total Posts : 9208
   Posted 2/25/2009 4:55 PM (GMT -6)   

Hi kelly1234.  Why was a spinal tap done?  From what I understand, this test shows Lyme in less than 5% of cases.  Have you been tested for the co-infections Babesiosis, Ehrlichiosis HME & HGE, Bartonella, and Mycoplasma through a Lyme lab such as IgeneX?  This is important.  Many doctors believe the co-infections need to be treated first.

It is my understanding that for Lyme treatment to be effective, it needs to be the proper dosages.  I don't understand why you will be paying thousands of dollars weekly for treatment.  Do you have insurance?  Insurance should cover a decent percentage of the IV.

I recommend getting another opinion.  Where do you live?  If you need a recommendation, you can email me at

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