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Hi All,
Had my 3 month check with the rheumy and he thinks I am doing pretty good. No visable signs of joint reddness or swelling, and quite frankly I am amazed at how 3 months on minocycline has made me feel this much better. I was so sick when I first found this site. The fevors, sweats, not to mention the joint pain and stiffness lasting all day. Being awake all night because of the neck and shoulder pain was a real problem too as I don't do well on little sleep. I run my own business and had to get to work, but here I am 3 months later being so very grateful for the work of Dr. Brown.
Actually I am pretty greatful for the other Brown too,(James) cause, ” I feel good, Like I knew I would!!” A little humor helps us all. The rain yesterday was a joint pain reunion but today is good. I know my Dr. is surprised that the mino is working as he was insistant on the methotrexate and I requested antibiotics instead.He does not want to see me until October and has still not taken any xrays to see if I have joint damage. Should I be concerned. My blood work has been normal for the last two months. He has given me the mino until October but I am afraid If I am still good he says I won't need to take it. Remember he is NOT an AP doctor just a regular rheumy who has never heard of Dr. Brown or his protocol. Now, I am not back to”normal” yet by any means but here is what I can do;
get down the stairs in the morning with some holding of the railing, zipping my pants, putting shoes & socks on , grapping the 1 gallon milk jug with one hand or coffee pot as well, taking the dog for a walk, starting my own car with key and carrying supplies for work up from the basement. I also laugh more than I cry now. I am able to read a book and not drift off, small amounts of exercise and even took a 5 day vacation. Oh and my favorite for the ladies, I plucked my eyebrows this week:dude: That was a big deal as my grip on a pencil was pretty bad. Today is a good day.
Now one of my students told me about a yard treatment to rid my yard of the deer ticks. I started my RA with Lyme and am still battling that as well. He told me he raises animals and puts ground lime in all of his live stocks bedding. You need to sprinkle it fully over the whole yard, with a spreader like a weed&feed spreader and do this right before a good spring rain. It will soak in the grass and kill any lyme producing critter:roll-laugh: You can get the lime at any feed mill .I am a huge gardener and can't wait to get in the yard but won't go there until it is treated as my yard is where I got sick. We have tons of rabbits and a herd of 7 deer that frequent my yard as my neighbor feeds the deer:headbang:. Now I still cannot get down on my knees because as you know lyme loves the big joints so does anyone have any ideas how I can garden in a modified way???
Thanks everyone!
Happy days!
Patti D.
Patti…Glad to here your improvement with the AP. I too am about to begin AP with my reumy who is not an AP believer. Did you do 100mg twice a day every day of the week? How long after you started did you notice any improvements or changes?
Now… the yard. What do you mean Lyme caused your RA? And yet you should put lime down in your yard? I don't understand.
Hi Patti,
What a great idea to use lime for the yard…especially if it works against those little blighters – the dreaded deer tick! Makes very good sense, though. I'd heard of using lime on brown patches where our pooch relieves herself. Apparently, lime alkalizes acid in the soil and brings things more into balance (not unlike the pH in our bodies). Such a natural, eco-friendly way, too. My husband was all gung-ho to spray with pesticides after I got so sick with Lyme, until he realized (a little birdie whispered in his ear) that it was going to be just as toxic to us and our pets. Besides, we're surrounded by woods and wetlands, with lots of great wildlife and deer tracking through all year round.
I'm still smiling, ear to ear, to hear about your progress on AP. 😀 The EMT teaching work you do is so invaluable and you are so dedicated….besides obviously being a woman of some strength and resolve! I feel sure you're going to beat this….or, let me rephrase….”We're” going to beat this!!!
Peace, Maz
Hi Diane,
I started with lyme disease like others on this board. I was treated with doxycyline for 1 month and 4 months later after feeling just fine developed full blown joint pain all over again. This time diagnosed with RA which I believe was triggered by the lyme infection. I am on 100mg of minocycline 2x a day. If I herx, I cut it down and skip a dose on that day. This has helped but generally I try to take the 2x a day dosage.
Now clarrification,
The lime you apply on your lawn to rid it of deer ticks is fine particle limestone, crushed, the white stuff. It is safe for your lawn & plants and it is a natural product. It is also safe for your pets.
Good luck with your treatment. I just reread the minocycline info on the American Academy of Rheumatologists website and it said minoclycline can take awhile to work , like 3 months and the true benefits of usage occur at about the 1 year marker . My blood work returned to normal 1 month after the start of AP. I have gradually felt better each week but the weather can give me sore joints real easy. I would say I have felt the best improvment begin about 2 weeks ago. After I was off of the prednisone for 1 month. That drug for me was horrible. I had huge mood swings, gained 22 pounds and had an increase in joint swelling. I told my doctor he would have a really hard time getting me to take prednisone ever again but this was my comprimise to get the minocycline started. He said it would reduce my swelling quickly to give the minocycline time to work. This method is mentioned in Dr. Browns book as being just fine so I went along with it. If you can do without the prednisone try. This extra weight is really bad and further more can't be any good for my joints. I now need a really good quick exercise program so I can reduce this stress.
Happy days! All good things will come with patience…
Patti D.
Happy days!
Maz-AMEN!! One by one all of these little critters that have invaded our bodies will be gone. 🙂
Thank you for the clarification on the lemon juice. I will try it tonight the correct way with the rind! Doesn't sound to good but I am willing!
Thanks again Maz. You have such a nice way of making us newbies feel good. I read everything you write as there is always something there that I too am interested in. I think I mentioned to you that I teach wellness classes occassionally with my first responder training. The most asked for class was lyme disease , so I am fortuate that I have an opportunity and responsibility to tell others how inaccurate the blood testing and diagnosis is for lyme. This makes the doctors a little angry but they need to understand it is time to stop testing for antibodies for lyme and find a test that measures exposure. And also come up with a treatment plan that works.No one should go through what we have had to go through. It is amazing that we keep our sanity. The only way to heal is to work through this and with support it seems to somehow be a lighter load to carry. Thank you!
Happy days!
Patti D
[user=287]Patti D LD 5/07, RA 12/07[/user] wrote:
I think I mentioned to you that I teach wellness classes occassionally with my first responder training. The most asked for class was lyme disease , so I am fortuate that I have an opportunity and responsibility to tell others how inaccurate the blood testing and diagnosis is for lyme. This makes the doctors a little angry but they need to understand it is time to stop testing for antibodies for lyme and find a test that measures exposure. And also come up with a treatment plan that works.No one should go through what we have had to go through. It is amazing that we keep our sanity.
Hi Patti,
This is really great that you have been able to integrate some Lyme education into your wellness classes! Your students are very fortunate to have you, although it is a shame that the most vocal have to also be the ones who are suffering or who have suffered most. It always amazes me how some very severe cases travel great distances to other states to join in protest marches and to lobby govt officials to increase Lyme awareness, some crippled and in wheel chairs.
You might find these links interesting. They pretty much say all as regards to what is going on politically for chronically ill Lyme patients.
Here is the link to the IDSA letter to Sen. Kennedy, doing its utmost to quash the Lyme Bill – this is a PDF document:
http://www.idsociety.org/WorkArea/showcontent.aspx?id=10818
And, here is the Lyme Disease Association's rebuttal letter (Word document) to Congress:
http://lymediseaseassociation.org/SenateLetter2008.doc
You might also find the Klempner YouTube video link just posted in a separate thread interesting. It's not new, but this is something my LLMD has also been telling me….Lyme Disease triggers rheumatoid disease and genetic predisposition has a lot to do with it, but that antibiotic therapy works!
Thanks for your very kind words of support, Patti. I always enjoy your posts, too, and you share such interesting, valuable information.
Peace, Maz
Peace, Maz
Hi Maz,
Thank you for responding. It is funny but back in February when you had responded to my early /first posts I never got to see the end result of that thread as the board changed and the discussion was left off of the page. I was so happy to read your response to Tiff as she had the same concerns that I had , is it lyme or is it RA and you brought her back to the old thread, so I for the first time got to see the discussion on my question. I am making copies of the letters to Congress. Might be a nice hand out for my students????
I frequently look up lyme for new information. I am so much better but just like Tiff,my joint pain comes on fast and leaves the joint just as fast and only to travel to another spot. I have not had any heart palpitations, fevers, wierd ringing in my ears, dizziness or strange feelings in the side of my face since on the mino. It took longer than the doxycycline did to work. (initial infection last may for lyme) That worked within 1 dose. I went from being unable to walk, put my clothes on to standing up and walking again with 8 hours. So weird. Now that I have the Arthritis Breakthrough I understand what happened to me the second day on the doxy. I have never had such horrible pain in my arm muscle that it caused me to pass out cold on the kitchen floor. The spot where the pain was left a huge dry scaly patch which the rheumy dismissed as dry skin which I didn't have any place else. It was almost as if the infection came out through the skin in that area. Did you have anything like this?
Well each day is a little better but this board sure beats boring the heck out of the family. I wish I could find a real AP doctor but have this Dr at least until October and the prescription as well. What i am afraid of is he will take me off of the mino and then where will I be. I probably should look for a real AP doctor now just in case.
Hope all is well.
Happy days!
Patti D.
Hi Patti…if you need a listing of AP docs nearest you or the best ones, if you're willing to travel, the second discussion from the top of the BB will provide you with the info to send an email to apdoctors@roadback.org
Yes, I had the horrible migrating pain in the beginning for about a month before it turned into all out, RA fixed in all my joints. I also had the searing pain in both my upper arm muscles. In fact, that's where the arthralgias and myalgias began for me. I was just sitting watching tv one night and got up and thought I'd ricked my bicep somehow. I asked my husband to see if he could pull on my arm as it felt like a trapped nerve or something. The pain intensified that same night to the extent that I thought I'd pass out. I couldn't lift my arm at all and had to lie in bed with it propped on a pillow, as every time I tried to turn over I thought I'd die from the pain. The next day…gone, just like that….only to reappear one or two days later in my outer wrist. Then gone again the next day only to reappear in two fingers that I couldn't bend, at all. It was truly bizarre. I did have the rash though in two spots (abdoman and back) so I finally made the connection with Lyme and went to my doc who was resistant to put me on doxy until my Lyme tests were returned. Long story short…this went on for weeks until he finally prescribed doxy for a nasty chest infection (which I also think was probably Lyme related and possibly even a mycoplasa coinfection). I was so far gone by this point, though, that I got the herx from hell and every joint in my body flared, including my jaw. MY GP had no clue about herxes and just assumed it had to be something other than Lyme.
It was a very overwhelming and confusing time and my LLMD has said on a number occassions, “If only you got that doxy at your visit with your PCP.” What can one very sick patient do, though? We rely on our doctors to provide the best of care and to knwo their stuff, yet most physicans have no clue about the larger implications of Lyme for those of us who might have an underlying genetic predisposition to rheumatoid disease and just shunt us off to rheumies who are equally in the dark.
Well, this paradigm is slowly shifting, but largely due to those suffering. Here's a very moving YouTube that says it all….and here's to all the good folk who are out there educating others and doing something about this, like yourself! 😀
http://www.youtube.com/watch?v=2-yrvOqbkmQ
Peace, Maz
PS Forgot to add…yes, I've had strange scaly, sometimes itchy rashes that have come up this past year. I haven't been sure if they were some type of allergy, herx-related or candida-related, though. These cleared after a few months and my LLMD wasn't too concerned about them, saying they were likely a part of the immunopathology of the disease and would improve with time. My best guess is that the rashes were the result of toxins escaping through the skin. At one point, though, I did wonder if it was psoriatic arthritis, although RF is rarely, if ever, elevated with this disease and my numbers definately correlate to RA.
Maz,
How do I find an LLmd? I am not sure if i have lyme, but it sounds familiar. I was never treated for lyme and do not remember any rashes, but I lived on 10 acres in Woodbury CT when I was young and spent alot of time in the woods. I burned many ticks off of my body through the years.
Thanks
Froggy
Hi Froggy,
If you still live in or near CT, I can give you my LLMD's info. He's in Wilton. Just let me know and I'll send you his details in a private message.
Otherwise, you can try the doctor referral link at lymediseaseassociation.org After clicking on the doctor referral link at the top of left of the main page, you have to register. They then send you a confirmation email, after which you can access the physician list up to three times a month and doctors are listed by city/state/zip.
Hopefully, you'll have luck and find the best doc for you. If I may, though, I'd suggest you call in advance to be sure the LLMDs treat as you would want. Some are more naturopathic, some integrative and some allopathic. Otherwise, it can be a bit hit and miss and you might find yourself kissing a few other “froggies” first. :sick: Also worth bearing in mind that some AP docs may also be Lyme Literate.
Another route you can try is to go to yahoogroups and search for a Lyme support group in your state. Sometimes this is the better route, because you can get doctor referrals from other experienced patients.
Peace, Maz
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