posted
I am a 29 year old female who has been struggling with severe knee, feet, and hand pain, heart palpation's, thyroid nodules, rectal bleeding,diarrhea, nodules on hands, chronic fatigue, hair loss, at times mind fog, and a few other symptoms that seem to come and go.
I grew up in California in the country and was constantly removing ticks, we moved to Southern Oregon when I was 5yrs old, then to Walla Walla Washington when I was 8yrs old. When I was in the 7th grade I started complaining of knee pain went to the Orthopedic doctor and he said that the padding between my knee cap and knee was wearing thin and gave me a brace to wear.
Then in high school I had intermittent hand pain that was so bad that at times I could not open or close my hand, also in high school I started experiencing rectal bleeding at times. I went to the doctor regarding the bleeding and they found nothing or any reason for it.
In College the pain then moved to my feet, I went to the foot doctor and he could not find any troubles with my feet and my hands again. I went to my PCP concerned that maybe it was RA he did tests and they all came back negative. THEN the pain got so bad that I decided I would do some research and change PCP due to the fact that I was not getting anywhere. I also have
Psoriasis since 6th grade and after doing research I thought that I would look into Psoriatic arthritis, I changed doctors and he wanted to treat me for arthritis and auto immune disease due to the fact that I was experiencing severe joint pain, rectal bleeding, and my thyroid had begun to get enlarged with nodules. He DX me with auto immune disease, I was NOT comfortable with "auto immune disease" DX so thought I would go to a arthritis specialist to which I did not feel like I got anywhere.
He told me that I did indeed have Psoriatic arthritis but that my SEVERE knee pain was not due to the arthritis. I left him still not happy with the DX, it did not explain all of the other S/S that I was experiencing. I then had a "God sent" sent to town, I was so frustrated and was about ready to give up when a new ND moved to town. She is wonderful and has done anything and everything she can to figure out what is going on.
She placed me on Armor Thyroid for my "Hashimotos" and I was tested for Lymes disease, the western blot that they did though was not the complete full version of it - the lab messed up, but the results came out to be: IgG was negative with no bands present the IgM was also negative because I only has 1 out of the 3 were positive, I had 41kDa was positive. She decided to treat me due to my clinical complaints with Doxycycline.
I started Doxy and it took about 4 days to notice any changes, the pain slowly started decreasing, I did not experience any heart palpitations, no bleeding, everything was going great until about the end of the 2nd month on Doxy. My figure started swelling but the pain was gone.Shortly after that the pain started coming back slowly and has now come back almost completely.
I stopped Doxy about 2 weeks ago and she has placed me on Ciprofloxin to see if that treatment will help. I have also stopped taking Armor thyroid due to my thyroid getting extremely enlarged. Last week for 1 day only I had a metallic taste in my mouth, I let my ND know and she is looking into it. I have nodules that jump around on my hands they are not painful but feel like beebees under my skin on hands.
She is amazing and has been the only doctor out of 3 MD that I have found to help me at all but am wondering if I should go to a Lyme specialist for a second opinion. I still do not know if I have Lyme disease and am a little frustrated cause nothing seems to be getting better. I am 29yrs old and do not want to live like this forever. Please help!!!
*note from sixgoofykids, I broke up the post for easier reading.
[ 02-07-2010, 10:17 PM: Message edited by: sixgoofykids ]
Posts: 3 | From Walla Walla Washington | Registered: Feb 2010
| IP: Logged |
posted
I would recommend checking out the diagnostic and treatment guidelines at www.ilads.org Maybe also print them out for your ND since she is willing to treat.
Cipro will not treat Lyme Disease. It will treat a coinfection called bartonella, but not Lyme.
If you'd like to see a Lyme specialist, please post under seeking doctors and someone will PM you names.
Welcome to Lymenet!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I saw you posted in "seeking doctor" and you received some replies from others, hopefully, for at least one LLMD or LL ND near you. I sent you the name of an experienced LL ND 3 hours away from you.
Your current ND may want to see the ILADS site to learn more about lyme but you need someone who is up to speed NOW. Just as a non-LL MD is not much good to a lyme patient, so, too - a ND may be marvelous in many ways but if not LL, not much good to a lyme patient as lyme is VERY unique, very dangerous and extremely complex.
Now, you may not have lyme - but you well could. A good LLMD can also assess for other tick-borne infections and will usually also know a great deal about other chronic stealth infections such as mycoplasma and Cpn.
Are you on a gluten-free diet? With your symptoms, I assume some of your doctors already suggested that.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
It certainly sounds like Lyme to me. And I saw a thread just yesterday I think of someone talking about the same nodules, under the skin.. relating it to Bartonella (a common co-infection of Lyme).
If I were a betting gal... I'd put my money on Lyme. I hope you are able to find an LLMD and see him/her quickly. (BTW..I had the same hand pain where it hurt to even open my hands when I was a teen)
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
| IP: Logged |
Good site for basic and indepth info on Lyme and coinfections.
be careful with the Cipro... can cause tendon damage and damage to the ears...
PS.. the doxy may have quit working because she likely put you on 200mg per day. Most of us took at least 400mg a day. You need that much to be effective.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
| IP: Logged |
Good site for basic and indepth info on Lyme and coinfections.
be careful with the Cipro... can cause tendon damage and damage to the ears...
PS.. the doxy may have quit working because she likely put you on 200mg per day. Most of us took at least 400mg a day. You need that much to be effective.
Thank you for your advice, I am gluten free, dairy free, and I am vegetarian. I eat and drink tons of fruits and vegetables, but stay away from Potatoes, eggplant, tomatoes, and oranges due to inflammation. I was taking 100mg Doxy twice daily for 3 months. Like I said it did help A LOT for 2 months but then pain started returning. Thank you for all your help!!!
Posts: 3 | From Walla Walla Washington | Registered: Feb 2010
| IP: Logged |
posted
Sounds like you've been through a lot! As you find treatments that work for you, you will have a chance to feel better.
Re one piece of your story: I had psoriasis developing. I drank some oxygenated water, and the psoriasis disappeared. At the time, I did not know I had Lyme. Lyme bacteria don't like oxygen. That's why we treat with various oxygen treatments.
Posts: 13116 | From San Francisco | Registered: May 2006
| 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/