I had a ton of lab work here is a list of my current stats:
H. pylori IGM positive
CD8 absolute low at 141 (she says it should be between 750-900)
Mycoplasma Pneumoniae positive at 2.56 How can I have Pneumoniae after 2 1/2 years of antibiotics?
EBV ab IGG positive at 5.00 (over 1.10 is positive) It has been 30+ years since I had mono, so she considers this positive.
CD57 =6 (My lowest ever, very very disappointing)
HHV6 Positive at 1:160
Systemic candida albicans, positive
Hemobartonella or mycoplasma positive
Dandy! So my immune system is having quite a struggle, which is not a surprise since I have so many active infections. (Oh, I forgot to mention lyme or babesia)
No wonder I cannot seem to get anything done.
Then again, under the circumstances, I am functioning better then most. (like I get up every day and get my clothes on. Most days I can drive, I feed my family somewhat. I can even dink around outside some days. Like feed the cows or repair a part of the fence) Dr said I am pretty sturdy, what ever that means.
Well I am not sleeping in the doctors parking lots before and after my appointment anymore, so I guess I am making some progress.... but I dog-gone it I am still sick.
I also have a spongy swelling on the back of my head since last week about the size of my thumb. Dr said it was inflammation bulge from my "neurological infection", you know, bugs in my brain.
Just call me petri.
I am on Amox, Biaxin, Cipro, and zithromax at the same time, along with mepron (And my LLMD is also a naturpath)
Well, I just had to write it down. Thanks for being who I could send it to. Cheers
Von
Any insight would be appreciated.
Posts: 258 | From Washington State | Registered: Nov 2005
| IP: Logged |
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Wow, I am not sure that I have any insights, but wanted to say that I hope you feel better and get better soon!
For me, taking the amoxy with biaxin and zith, along with the cipro, might be hard on my gut.
What are you doing to treat the candida and support your immune system? Your body is dealing with so much, both the viral and bacteria and babesia. For me supportive things like rest, saunas, and warm epsom baths helped with feeling better and getting through strong treatment, which ultimately has helped alot.
Sounds like the most important thing is that you have made some progress. TBD treatment can be so rocky, my doctor always says he is most interested in the overall trend and trajectory....
Feel better and happy 4th!
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
Does your doc think you should be on an antiviral med or herb?
I think the easiest one to treat on the list would be the H pylori. Research Manuka honey -- have been wanting to order some for hubby. I think I would give that a try.
Hang in there. At least now you have some idea of what you are dealing with.
Hubby's new LLMD believes in treating everything tickborne at the same time -- but treating the infection with the worst symptoms the hardest. Of course it is still a guessing game since symptoms overlap so much.
I think the place to start would be to make a list of symptoms and see if they match up with any specific infection. You need some sort of plan of atack.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
Thanks for your input Vermont Lymie and Bea.
I really appreciate the support. Where would I be without lyme net flash buddies? Other people do not get it. I look to normal I guess.
I was treated for h. pylori for the 4 months of amox, biaxin, and previcid last year, and it was 'gone' according to the h. pylori breath test. So it is frusterating to have to start all over again.
I have taken ALL these antibiotics before during my last 2.5 years of lyme and co's treatment. (in various combinations) Never all at the same time though, maybe that is the key in my case.... who knows.
I also had HME and HGE and regular bartonella, have not been tested for those for about 1.5 years, but at one point, my previous LLMD thought they were gone according to lab results.
Sorry to write a book.
I am on fish oil, coptis, immune power,and bacopa, tri-magnesiam, ultra B, and vit D for immune support.
Plantizyme, boluoke and similase for 'biofilm'
And for my gut: Intestional rejuvenx, Theralac (1800-926-2961 best pro-biotic ever according to my doc) and Saccharomyces boulardii (healthfood store, another probiotic, specific help to try to protect from c. difficile colitis, which I had)
Yes, all the meds are hard on my gut..... but my first, and most distressing symptom initially was 'bell's paulsey of the gut' so I would pick loose stools and stomach pain any day over that.
I am on dyflucan 100 mg per day for yeast.
I am not on an antivirial at this time. Not sure why..... but I am having a hard enough time managing my med now anyway, so I guess it can wait.
I swear, all these meds/herbs are a full time job.
I tend to be stubborn, and see myself as strong, so it is hard to accept that I am still sick. But I need to embrace it so I can handle it.
I filed for disability this week, which was very depressing for me. I have not worked since last Oct. Before that I worked, even with my IV. But I cannot recover and work.
I feel really lame about filing, because I am better off then many. However, I think it is prideful of me not except help. What, I don't think I need help? It is dumb.
I feel like I am such a drain on my family. My husband has been very supportive finalcially, and has wanted me to have the best doctors over the last few years........
But just THIS WEEK I think her finally got it that I am really sick. Duh. Like he is worried about me driving today, and wants me home before dark.
Love you guys! Thank you again.
Von
Posts: 258 | From Washington State | Registered: Nov 2005
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
SSD is about your retirement early due to health matters. You paid into this. It is not some give-a-way. There should be no stigma.
I hate it when people use the word "on" disability. No, you would request your benefits (that you paid into the SSA as an insurance) from the program in place for those who become disabled, so they would take their retirement funds early.
It's tough but you deserve the support you need to take care of yourself. Again, this would come from your participation in the program over all these years.
Or, for those unable to do that, SSI is the program in place.
Believe me, even corporate giants are getting government program funds.
The sad thing is that if you file for SSD/SSI the process is a grueling one that does chip away at every once of humanity.
Don't let it. Try to see it as objectively as possible.
Just want to say I'm sorry and rooting for you, plus let you know you're not alone, as I'm a walking petri dish, just about like you, too! (big hugs)
Love, Light, & Health, Jennie
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic