I have been diagnosed with chronic lyme & have been bumbling around trying to get proper treatment so I can return to work and my life. I am already looking for another physician, since I've been treated for 3-4 months & I'm just as sick as when I started, but I'm confused about what to do with my husband.
After doing some research on LD, we decided to get my husband tested. He came back with IGG positive & IGM indeterminate (the exact opposite of mine). We discussed this result with my ID MD & he did not want to treat my husband, despite continuous tinnitus & concentration challenges. We also just found out today that he may have a pituitary microadenoma & I wonder if this could be due to Lyme.
I am concerned that if he doesn't get treated, he will end up as sick as I am. Of course, since all the medicine I've been taking hasn't helped, maybe he's just as well without the drugs.
Has anyone had this experience & what have you done?
Confused & Looking for help...
Posted by map1131 (Member # 2022) on :
Hello,inadaze. Just some of my thoughts about your post. Your husband is symptomatic, therefore he needs to be treated. From my experience, yes the pituitary problems could be very lyme related.
Have the testing done that is needed on the pituitary to be safe. I've always said having lyme & looking for a fix is like working a 10,000 piece puzzle. Which way do I go? Which way do I go?
Take care, Pam
Posted by valymemom (Member # 7076) on :
I agree with Pam. My husband has tinnitus, vertigo and air hunger and has agreed to testing in January.
Posted by char (Member # 8315) on :
Hey,
Well, it is all so stressful and confusing to navigate treatment at beginning. It does get a little better as you go and get over the shock.
You need to get to a good lyme literate dr. A dr who understands lyme and worth his salt would treat your husband. (Understand this is my opinion, based on what I have learned with myself, daughter, and son undergoing treatment for chronic lyme.)
It is so good that you are getting treated, and that at least this disease diminishes with antibiotics.
You should be urgent to get him and yourself in to educated dr, but it may take time on a waiting list. You will get in and it will be all right.
You can search for good dr. under finding a dr on this site.
Best Wishes and keep us posted,
Char
Posted by Carol in PA (Member # 5338) on :
InADaze: You said your husband's symptoms are tinnitus and concentration problems?
If your doctor doesn't want to put him on long term antibiotics, you could investigate some of the alternative therapies for Lyme.
Have you read Dr. Burrascano's Guidelines, dated September 2005? Click on the "on-line library" link in the upper left corner of this page.
There is a section in the Guidelines about which supplements are helpful when you have Lyme Disease.
He should at least be taking the recommended supplements, which will support his immune system.
You can read info about alternative therapies at LymeInfo.net. LYME DISEASE ALTERNATIVE THERAPIES http://www.lymeinfo.net/alt.html
Another supplement to read about is Vinpocetine, which increases bloodflow to the brain, and is supposed to help tinnitus and mental fog.
Even if you don't want to do alternative treatments, at least take the supplements.
Carol
Posted by klcst (Member # 3427) on :
My goodness! How long have you been on meds and what are you taking? It takes a good 18 months before you turn the corner where you feel well more than you feel lousy. Don't go switching meds like so many do because they don't feel it working within a few months.
In our support group those that are doing exceptionally well stuck to 100mg Doxy, and 500mg Biaxin, both twice a day. This worked well for me until I suffered a full relapse, because I went back to work to help pay for this stupid disease, but I am now taking 5oomg Levoquin, once a day, and I am doing better. Also, did your doctor check for co-infections? If not, your symptoms could be another infection that goes hand in hand with Lyme. WHen you don't treat the Co-infections first and you go on abx's for the Lyme, the co-infection goes rampant. Then people are walking around saying my Lyme is not getting better when it may very well be getting better, but the other infection has taken over. Get tested for Mycroplasm Fermentins (sp?), BArtonella, Babesia, and Ehrlichliosis if you haven't already.
As for your husband, mine became symptomatic after 16 years of exposure. Definitely go on meds for him now, whether he has symptoms or not. Don't wait until he has to leave work because he is disabled by this disease. Then get yourself some condoms, not that this is foolproof either, but it can't hurt. You would like to not keep reexposing each other. In 2003 there was an Associated Press release from the New York State Health Department adding Lyme disease to the communicable disease list. It is sexually transmitted.
I wish you both well. If you have any other questions you can email me direct: [email protected]
Take care-Lisa
Posted by JimMet (Member # 7787) on :
InADaze,
At www.drcharlescrist.com the Lyme-literate doctor says the take-away message from his website is that borreliosis can cause ANYTHING. So, perhaps your husband's symptoms could be from Lyme.
There are some people who believe Lyme is sexually transmitted. But this hasn't been proven, and many Lyme-literate doctors don't believe it is--and they've seen more patients with the condition than anyone on this board. That's why you won't find anything about it at www.ilads.org, which is the premier site for reliable information about this disease. Notice that I don't say that it isn't sexually transmitted; I say that it's not been proved that it is.
Keep in mind that just because a disease is identified as infectious doesn't mean that it's transmitted human to human.
Remember, this is a site peopled by laypersons who bring to it a variety of misconceptions. It wouldn't surpise me if I read here that burying a brick in your backyard would heal LD. After all, some here believe that passing your hand over their bodies like Franz Mesmer will heal it.
Take anything you read here with a grain of salt--including what I say.
Good luck!
Posted by InADaze (Member # 7711) on :
Thank you for your thoughts on what I can do to keep my husband from experiencing the disability I am.
We already tried Samento, with no resolution to his symptoms. We did not test him for co-infections, since I tested negative for Babesia thru Igenix. However, my new MD thinks I may have Babesia based on my symptoms, despite the negative test.
How common is it to test negative for co-infection while still being positive? Is Babesia communicable?