Official Diagnosis- Lyme

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mokeyho
Regular Member


Date Joined Aug 2009
Total Posts : 103
   Posted 9/26/2009 4:44 AM (GMT -7)   
My neuro said I didn't have lyme (she was referring to the WB with two hits) and was pretty sure I had MS.  I met with an LLMD and he said I definitely had lyme.  The neuro sent me for a lumbar puncture and my LLMD asked me to get an extra tube of fluid to take to a lab that specializes in lyme testing.  Well, they found lyme in my spinal fluid, along with bebasia.  I had Bell's Palsy 16 years ago and I was diagonosed with two odd allergies 25 years ago (allergic to cold and pressure).  So, my LLMD said that I've had lyme for at least 16 years, possibly longer. 
 
Treatment- I'm taking two oral antibiotics for 60 days- Omnicef 600 mg daily and probenecid 1000 mg daily.   They are inserting a PICC line next week. 
 
My body is deteriorating very quickly.  Sun-sensativity started in April 2009.  Left-side numb in August 2009.  For last two weeks, my right-arm has strange vibrating sensations, so much so, that I jump when it happens.  The right-arm issue is definitely connected to my neck- when I bend my neck forward, my entire right-arm tingles.  Also, my memory is deteriorating.  I forgot about a funeral on Thursday for a friend from HS that I found out about on Monday.  I didn't write it down, but when I got on FB on Friday, I realized I missed it.  Just things like that- forgetting major events. 
 
Anyone know how long before the anti-biotics will improve the symptoms?
 
Thanks,
 
Michelle  

Lyme in MD
Regular Member


Date Joined Sep 2009
Total Posts : 27
   Posted 9/26/2009 5:50 AM (GMT -7)   
Really depends on how long you have had Lyme, Michelle.  My Lyme doctor's approach is low-dose antibiotics for several months if not years (for those IgG+), if necessary (I have probably been infected for at least 13 years).  This flies in the face of the traditional approach (Doxy for a month).  My doctor told me beating up Lyme with heavy doses of antibiotics upfront is only effective for recent, "active" infections, and he opines the Lyme can still resurface at any time.  He has seen the best results with the low dose approach.
 
I have babesia as well, and have been taking Mepron (Atovaquone).  Extremely expensive stuff (about $1000 a bottle retail, and $200 a bottle with BC/BS).  But fortunately my BC/BS coverage has a mail order program which allows me to get it more affordably.  Hope this helps.

mokeyho
Regular Member


Date Joined Aug 2009
Total Posts : 103
   Posted 9/26/2009 10:14 AM (GMT -7)   
Are you in Maryland? That's where I am :) I see Dr. J.

Lyme in MD
Regular Member


Date Joined Sep 2009
Total Posts : 27
   Posted 9/26/2009 11:06 AM (GMT -7)   
Yep, sure am mokeyho. Live in Severna Park. I see Dr. F in Rockville. Have heard of Dr. J. Dr. F came highly recommended from a colleague of mine whose wife unknowningly fell victim to Lyme and was bouncing around from specialist to specialist (even NIH couldn't figure out what was going on with her). Dr. F was recommended to her by doctors conducting an "out of the box" fibromyalgia study locally using brain scans and surface EMGs (which I also participated in for about 3 months until they suspected I had an infection). I was amazed that we were both participating in the same study, yet my colleague sat right across the hall from me at work and I had no idea!! I am pleased to report that fortunately Dr. F caught her Lyme early enough that she has seen a SIGNIFICANT improvement in her symptoms, though she still continues to take low dose antibiotics and supplements for maintenance to build her immune system back up. Since she was symptomatic (classic acute Lyme, which the serology later confirmed), Dr. F went after it with right away with IV therapy even before he got the results, and it probably saved her from developing persistent chronic Lyme like I have. So once I got that kind of recommendation (by someone I knew fairly well at work and trusted), I figured I had no need to look elsewhere.

Please keep me posted, and PM me with ANY questions you may have. Dr. F believes it is an epidemic in our area, and that many are walking around with Lyme and don't know it or are not getting properly diagnosed or treated. Hard for me to dispute this given my personal situation. EVERYTHING he surmised I had just by LISTENING to me (a skill many doctors these days have forgotten) have turned out to be true through subsequent diagnostic tests (Lyme, babesia, metabolic syndrome, thyroid disease).

mokeyho
Regular Member


Date Joined Aug 2009
Total Posts : 103
   Posted 9/26/2009 2:40 PM (GMT -7)   
I live in Rockville! I didn't know about Dr. F. I had heard about Dr. J because my SIL and my friend mentioned that their doctor had a fascination with ticks. I was looking for a Dr. J because he was mentioned on this board and someone mentioned his blog. I really stumbled upon him in conversation with my SIL because I told her that I needed an LLMD and that's when she said her doctor had a jar of ticks in his office. I asked, Does his last name start with a "J" and that's how I found him. I was so close to cancelling my appt with him because I got the MS diagnosis and thought, what's the point- the neuro said I definitely didn't have Lyme. He completely disagrees with her Dx! I feel very fortunate that I got the second opinion.

So, I guess I'm chronic if I've had it for so long. I just don't get why it took so long to really start bothering me, though I guess I've been moody, had strange electrical sensations and numbness on and off for many years. I just figured it was hormones, the unexplained and getting older. How long have you been receiving treatment and do you feel any better?

Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 9/26/2009 3:38 PM (GMT -7)   
Hi Mokeyho,

It's great you got a diagnosis! Also- although I don't know why, I do know that some people remain symptom-free for years. And in my case, I had a lot of symptoms that I didn't recognize. Mild cognitive difficulties, mood swings, and the other brain-related lyme symptoms can be hard to catch until they become quite severe. Looking back, I am amazed at how many symptoms I ignored, or wrote off to other things.

Good luck with your treatment! It might be long, but remember- you can get your health back.

Nicky

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 9/26/2009 5:23 PM (GMT -7)   
Hey Mokeyho,

I'm so glad you pursued this further. Go get treated and get to healing. Good luck hun.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Lyme in MD
Regular Member


Date Joined Sep 2009
Total Posts : 27
   Posted 9/26/2009 6:12 PM (GMT -7)   
@Mokeyho - This Lyme world is smaller than we think ;-) So glad you are getting good care. I have to believe our doctors know each other and swap stories. My doctor is so overwhelmed with new Lyme patients that it takes up to 4 months even to schedule the initial consultation.

@Nicky - You are 100% correct. Now that I look back on my childhood, I remember being one of the slowest readers amongst my classmates during that "Learning To Read" class when they would put you in a dark room and had to read rolling text on the screen. I HATED that class, and reading altogether (and still do--rather listen to books by tape). Reading comprehension has been a challenge for me as long as I can remember. I have to read things 3 and 4 times for them to sink in (sometimes one sentence at a time), and at that, I can only store the information in short term memory. I am surprised I got through college with decent grades. My strategy was to cram and rely solely on short-term memory. I have also always had a hard time maintaining focus and concentrating. And I just thought that was just "me" and the way I was genetically built. But now I can't help thinking it was Lyme. I also had terrible IBS all through school, another symptom I paid no mind to back then. I thought it was just "my nerves" and eating garbage food.

I was hospitalized for a week with what was deemed "a virus of unknown origin" at the age of 5. My Lyme doctor has theorized that I could well have been infected then, when I told him about my symptoms (high fever, aches, listlessness--or so my parents told me--all indicative of the flu-like symptoms that can be experienced with Lyme). But this would have been before Lyme was even formally recognized by the CDC as an infectious disease. I have lived in Maryland my whole life amongst the oak trees and Chesapeake Bay, and romping in a raked pile of leaves and playing hide and seek in the woods was a way of life. I showed my Lyme doctor the brain scan I had done by the doctors conducting the fybromylagia study I participated in. There was a very conspicuous "hot spot" in my brain that graphically displayed (in concentric circles) what the doctors conducting the study believed was some caused by either blunt force trauma or a parasite/infection. This same area also showed a significant level of Delta wave activity, what the doctors called "Delta wave slowing." As you may know, Delta waves are experienced when you are in your deepest part of sleep. Delta wave activity SHOULD NOT/NOT be present in healthy awake adults. What does this mean? It means that a part of my brain that is responsible for cognitive function is in DEEP SLEEP during my awake hours, which is HIGHLY indicative of brain damage of some sort. But because I have very strong Alpha and Beta wave activity, they said I have been able to "overcome" the Delta wave slowing and have been able to perform at a relatively high level. It all makes so much sense now it is scary. Could the "hot spot" have been where the tick bit me LONGGGG ago which led to my hospitalization as a child??? It is looking more and more like that is a very plausible theory.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 9/27/2009 10:45 AM (GMT -7)   
Lyme in MD, How low of a dose of abx does your Dr prescribe? And can you give me some idea of how old of an infection he considers to be old enough to prescribe long term, low dose abx? I am not by definition IgG+, but have a positive IgG band 39.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.
What don't these nasty bugs cause? 
CD57= 60, so we're in pretty good shape.
 


LuluBellesMama
New Member


Date Joined Sep 2009
Total Posts : 2
   Posted 9/27/2009 1:29 PM (GMT -7)   
Hi Michelle,

I wish you luck on your journey. I was dx on Fri, and don't have any plan yet. On my way to the DR on Fri.

mokeyho
Regular Member


Date Joined Aug 2009
Total Posts : 103
   Posted 9/27/2009 3:09 PM (GMT -7)   
Thanks to all for responding. This is all very helpful and comforting. My thyroid levels are now indicating hypothyroidism, when in March they were on the low end of the normal scale, in August they are past the high-end of the normal scale. Does anyone know if hypothyroidism been linked to Lyme?

Lyme in MD
Regular Member


Date Joined Sep 2009
Total Posts : 27
   Posted 9/27/2009 5:52 PM (GMT -7)   
Yep, it has in my case, mokeyho. I'm hypo, and what is particularly problematic is that for some reason, my body is not producing the T3 like it should, not even close. Lyme doctor has prescribed a combo therapy approach to treating my thyroid disease (lowering my dose of Synthroid and adding a specially formulated T3 prescription) in an attempt to get the T3 titer (which way outside the norm) even close to where it should be. Best of luck with it.

BTW, my apologies to the poster, but someone asked me earlier today about what my Lyme doctor considers "low dose" abx. I have been frantically trying to respond to everyone over the past couple of days, and this one fell through the cracks. Since I am allergic to amoxycillin and had terrible acid reflux with minocyclin, we've been going with azithromicin (600 mg EVERY OTHER DAY) since my total thyroidectomy last October (Lyme doc had found a nodule, originally suspected to be cancerous through biopsy--but it wasn't doing me any good anyway). I have had no ill effects, and I am due for retesting in a month or so to see what impact it has had on the Lyme titers, if any. But like my Lyme doc says, you can't treat a 13-year old problem in 13 days. He has been more aggressive with the co-infections (babesia and bartonella--taking Mepron and Bactrim respectively and in higher doses). Sorry again for missing your question!!!
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