Discussion in 'Lyme Disease Archives' started by victoria, Jun 8, 2006.

  1. victoria

    victoria New Member

    you stated on the CF/FM board your daughter had Lyme for a long time... can you share her story with us? Have you been tested for it?


  2. mrdad

    mrdad New Member

    Hello Victoria!!
    I'm sorry that I just now saw your post inquiring about my Daughter's Lyme disease. She lives in Ore. now but acquired Lyme when lived in Northern Ca. Although she is almost 29, she has had the disease for about 10 years.

    Don't know for sure if she acquired the disease while living in the Valley or on any no. of trips to the Sierra.
    The other possibility is that she contacted the Lyme while working as a Vet Assistant. She was given massive doses of anti-biotics to fight off the initial phase. However, it may have lay dorment for years before the manesfestation.

    She continues to had immune issues but works fulltime and hopefully will be attending Grad School this Fall!! Spoke with her last nite and enlighted her about this great website and the people on it!! I think she may be contacting you soon. Luckly she had a very knowledgable Doctor in North. Cal out the onset. Thanks for inviting me to "come aboard". Best wishes to all, MRDAD
  3. mrdad

    mrdad New Member

    Hi Again Victoria,
    I forgot to answer your question about whether I have been tested for lime?? I tought I had about 3yrs ago. I had requested my Doctor on a number of occasions to do so. As I get alot of blood work done for my Hemachroma. and liver problems, he assured me I had been tested and it came out negative!! Found out recently from my new Doctor that my Medical records show no such test!! Hows that for Medical ethics?? I had even informed him that I had lived in the Sierra for ten years and had taken ticks off myself and animals. Also that my daughter had the disease.

    Evidently, he felt because I was back in the City I had litle chance of contacting Lyme and my request wasn't an issue. I am going to do a Test soon and my new Doc is on board with me. On my nest appt. I am going to discuss the Western Blot with him and attempt to have that done soon.
    Anywho, thats my story. The old Doc is going to hear from me if I come up positive!!

    Try to have a great weekend. I'll "talk" to ya soon!
  4. victoria

    victoria New Member

    It will be interesting to know how your test(s) turn out... is your current doctor also testing for other stealth pathogens assoc with Lyme or for mycoplasma?

    I am so happy to know your daughter is doing well enough to go to school and able to get on with her life! It seems all too often we mainly only hear about people with chronic lyme who are not getting better... and it can sound so discouraging!

    --but of course those are the people online looking for solutions. I know I wouldn't be doing as much if my son were well or I was over CFIDS myself.

    Was your daughter ever tested or treated for possible co-infections?

    The LLMD my son sees feels that people with chronic lyme will need to do preventive rounds of abx and/or other 'alternative' protocols as well to keep it at bay; he feels it may never be totally gotten out of the system :(

    I was reading about Dr. JoAnne Whitaker (who invented the Bowen Test) - she found to her surprise she had lyme, and does this as well along with abx.

    So do you have hemachromatosis as well? My MIL has this and so it was the first thing we had our son tested for, but negative. It is amazing how the symptoms overlap.

    We also had the genetic testing done on him and our daughter (and my husband), they are unlikely to be carrying the known gene/s, but they don't feel they know all there is to know yet about it, so it will be something they all have to remember to have checked periodically as it can occur at anytime.

    I was really hoping that WAS the reason for his aches and pains, fatigue, etc as the solution was so easy - all my MIL had to do was have blood taken at intervals, got rid of 99% of her 'arthritis' and fatigue.

    Oh well, I'm rambling on, LOL...
    Let us know what your results are?

    all the best,

    [This Message was Edited on 06/09/2006]
  5. mrdad

    mrdad New Member

    Thanks for all the info you have rendered concerning Lyme. I'm sure that Beth is also absorbing your valuable words and experience.
    Yes, I have hemochromatosis. It's that Northern European, especially Celtic curse. Being Irish and Northern French, I didn't have much of a chance! Ferriten was over 7300 before they discovered it with resultant Cirrhosis. Had to quit "Happy Hour". Oh well!! Other than the CFS that I think could have been triggered by the "blood disorder", I doing physically fairly well.
    My former wife is Irish and English by descent so I'm monitoring my adult children for the Hema. problem. Discouraging a Genetic test on them as I'm affaid of a Medical Insurance "red flag" that may in the future deny them claims based on prior genetic testing for the disease.
    I'm encouraging "iron and Ferriten" level tests on a regular basis for them to monitor any possible problems.
    "Talk to ya latter and thanks for your interest---

  6. BethM

    BethM New Member

    hello on this board, too! What doc do you see? A specialist or a generalist who is lyme literate? I had planned to sign on with my cousin's doctor, as my cousin also has fibro and this doc has worked well with her, but my options are open, as long as the doc takes my insurance.

    What a concept,to go to a doc who doesn't have to be taught about the problem before he or she can treat for it!

  7. victoria

    victoria New Member

    it really is a treat to see a doctor and staff who know what the latest research is!!!! It's one of the reasons why I like the clinic my son is going to.

    MrDad - my MIL is half Finnish and half English... so I guess it is the extreme northern European heritage? I am German descent but think it is southern Germany mostly, LOL, but with all the moving around people did and do, one never knows!


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