It has been awhile since I have been on here. I usually stop in and read about once a week. This April will be a year since I have been treating. My doctor is in ** Mo. Six hours drive from my house.
My symptoms were major migratory pain. Jumping daily to different locations. One day in my foot, next day in my shoulder, next day in my hand....etc.
The migratory pain has just about gone away. Although, I have acquired a 'bruisy' type pain. For the past month, this bruisy pain has been in my left arm, from the shoulder down towards my hand.
I am still feeling worn out. I really have to push myself to do anything. I do work full time. Desk job, so it isn't too demanding.
I am still a forgetful, still a little brain fog.
For the past couple of months, I am having problems with my eyes burning and tired. I could close them and maybe never open them up. Closing them makes them feel somewhat better.
I read that aerobics (in my case Zumba) is not good for Lyme patients. My doctor says aerobics is fine as long as I feel like doing them.
I am trying extremely hard to eat correctly. I have gained about 50 pounds in the last two years Although I did quit smoking about two years ago and I am sure that would account for a little weight gain.
I have lost a little by eating correctly. I am 60. A very youthful 60 under normal circumstances. I stay away from sugars and fried foods. I tried gluten free and could not tell much difference at all. I usually steer towards wheat bread, If I eat any bread at all. Same way with pasta. I will eat wheat pasta if I desire pasta.
I keep my yeast under control with either Nystaten or Diflucan. If it seems to get out of control, I will use Diflucan.
I am using drops for my eyes. I think that they are some kind of antibiotic drops? I am at work and cannot check to see the name of them.
I am also taking Omnicef....by itself (by itself means no other antibiotic). I also supplement with Potassium, Vitamin C, Vitamin D, 2 billion probiotics a day. I also take an iron pill.
I have done what the doctor has told me to do. I still have many of my original symptoms, and have acquired a few new symptoms. Others on this site have said I need to change doctors. Seems to me for a doctor to treat me like he needs to treat me, it will take more than an hour every four months. My opinion, that in itself is a little risky.
My next appointment with Dr. C is March 13th. I have all of these prescriptions with refills. I am seriously thinking of saving myself some money and just refilling what I want to when I want to and go on my own. I have Burrascano's guidelines.
I also have a personal doctor that would probably prescribe whatever I needed, within reason. She is familiar with my condition. I have given her a lot of reading material and she has read it all.
I do not have the funds to continue making the six hour trip every 4 months. Today, this is the way I feel....tomorrow I may feel differently. I have no one to talk to about his...no one understands.
I try to keep every day life as 'normal' as I can. I don't discuss my condition with anyone. I usually go to work every day, come home and the meals I fix usually take less than 30 minutes. I consider what I eat more like the Mediteranean diet.
After dinner, I usually fall asleep on the couch. I feel like I get plenty of rest, but I am still tired all the time.
Looking for feedback and opinions. Sincerely.
**edited city of LLMD**
[ 02-11-2014, 09:08 PM: Message edited by: Lymetoo ]
Posted by KH111 (Member # 25829) on :
Have you been checked for co-infections? It seems like you still have something going on and one antibiotic will not be enough. Did you check for bartonella? It can affect the eyes.
Also, does your doctor do conference calls? We did this with our dr in NY and worked out very well.
I hope you find answers.
Posted by carolann2013 (Member # 39964) on :
I have only been diagnosed clinically. I did have a test from Labcorp which showed borderline Rocky Mountain Spotted Fever. I did get bit two times, I did go to the doctor, he did see the bullseye rash. I did take Doxy for about three weeks. Almost a year later, the migratory pain began.
Researched and I came up with Lyme. I went for another Lyme test. They sent it to Labcorp. Nothing showed up. I made several appointments with different doctors. Everything was normal.
I made an appointment with Dr. C. He diagnosed me with Lyme. He also made note that my Labcorp test did show me borderline RMSF.
He took several blood tests...Hormone Panel test and some other tests. Never a co-infection test nor a Igenex Lyme test.
I have never requested a conference call. I have faxed him with questions and his nurse will usually call me back and do whatever I ask her or she will give me options to an answer to whatever I asked of her.
Posted by gmb (Member # 23562) on :
Omnicef is a good starter for the first month or so. Have you been on this for the whole year? By now you should be on a multiple ABX protocol hitting lyme along with either a bart or babs ABX.
I would ask for a trial run on Rifampin and hit bart first and see how you feel after 3 or 4 months. Zith, Rif, and Doxy is a good combo. Always add only one new ABX at a time to cause your reactions.
Also you will need to do bi-monthly labs for Liver and Kidney issues.
Cutting out all breads and pasta will go a long way to reducing weight gain and controlling yeast. When lyme sx hit me around the same time as I quit smoking I gained like 35 pounds before I got to an LLMD 2 years later. Within a year of aggressive treatment I lost most all of those gains.
good luck
gmb
Posted by carolann2013 (Member # 39964) on :
No, I have probably been prescribed every antibiotic that there is.
I was given Doxy first and took it for about 2 months. I have taken amoximillin for about two months, ..
The only times I took multiple antibiotics is when I took Amoxicillan with Augmenton.
Also after that I took Biaxin, Plaquenil, and rotated it with Quinine (which gave me very high fevers) with Clindamyacin.
Then I took Rifampin with Flagyl (I volunteered myself into taking the Flagyl) and now I am taking Omnicef.
Before that I have taken Minocycline, Zithromax with doxy and I can't remember all of them.
I am due another lab for my liver and kidney issues. They don't do it bi-monthly, they do it more every other month.
Posted by Lymetoo (Member # 743) on :
Since you reacted so severely to the clindamycin/quinine, then perhaps you still have some babesia to clear?
I wonder why you aren't taking flagyl with the omnicef? Have you taken very much flagyl?
What kind of symptoms did you have when you took the Rifampin?
Posted by Catgirl (Member # 31149) on :
Have you read Burrascano's protocol (16th edition)? Once you start reading it you may notice that you have other co infections.
If not getting better, I'd consider a new doctor perhaps. That LLMD does not follow Dr. B's protocol based on personal experience and endless stuff I read. Much less aggressive. Just my opinion.
Posted by carolann2013 (Member # 39964) on :
Hi Lymetoo, I have some Flagyl. If they go together, I will take it with it. If I don't have it, I have a prescription refill I could get it refilled.
So, all of you that have given me your thoughts, you are implying that I can take control of my treatments and referring to Dr. B's protocol I can make my own protocol?
Posted by carolann2013 (Member # 39964) on :
Lymetoo, I don't think the doc necessarily goes by symptoms in the respect of prescriptions. He does four months at a time and gives me a schedule to go by. I don't think he had me taking multiple antibiotics except for augment and amox. He did have me taking the clinda and quinine and that drove my fever up...not sure if it was the quinine or the clinda. I rotated that for ten days with Biatrim (????) and plaquenil.
That is the only multiple anti's that I have been prescribed by the doc.
But if I have the refills and Dr. B's protocol, why can't I just follow it on my own instead of being out 1400.00 every four months traveling to the doc?
Interested in any pros and cons to this. By reading the posts here it sounds like most have taken it upon themselves to take what they feel they need to take and when they take it. I have read several times that WE are our best doctors.
[ 02-12-2014, 02:32 PM: Message edited by: carolann2013 ]
Posted by Lymetoo (Member # 743) on :
$4,000? Whew!
What you decide to do is up to you. I don't think any of us can advise you on that. I would read the recommended books and speak to your LLMD about it. Protocols can be tweaked. Having a Dr who is willing, means a lot.
Posted by carolann2013 (Member # 39964) on :
1400.00, sorry. It feels like 4000.00.
Posted by Lymetoo (Member # 743) on :
OH, whew! I thought maybe that was for airline tickets and motels, etc. plus treatment.
Still a lot of money though!
Posted by Sammi (Member # 110) on :
I agree with seekhelp.
quote:Originally posted by carolann2013: But if I have the refills and Dr. B's protocol, why can't I just follow it on my own instead of being out 1400.00 every four months traveling to the doc?
Treating these diseases can be quite complicated and multifaceted. I think it is very important to be treated by the best doctor you can if possible. These doctors have years of experience and in-depth knowledge. Patients need to be properly monitored during treatment. No matter how much we learn, we are not doctors. This is my opinion.
Many doctors will spread out in-office appointments and do phone appointments in-between for patients who travel.