help :(

This is a post that I made under RA, a few people responded well two but that was it. My lyme doctor also responded to me and I have posted what she said below as well. I am just concerned with going off meds all together as the last time I did that my symptoms got worse I was an emotional wreck and that is actually when the pain started in my joints only to get worse since starting them back...
Hello I had been posting in the Lyme forum because I was diagnosed with Lyme and bartonella (tested positive for both) a little over a year ago. I have been on antibiotics for a year trying different kinds to see what works best. Over the past few months I have developed stiffness and pain in my joints. My hands are stiff (esp when I wake up at night I can barely move them and if I do without really noticing it is very painful), as well as my fingers and wrists. When I get up after sitting down I tend to limp because my knees and ankles hurt and are in pain. I also have pain in both elbows constantly, the inner elbow. When I touch them its very painful and when I lift anything or use my muscles it radiates in each elbow. I cant even lift one of my 7 lb cats without pain.


This is my post:


I saw a rheumatologist who did bloodwork and did not test positive and they stated that they could not see any visible inflammation, told me it was fibro. Yeah because tha tmakes sense when I wake up at night barely able to move I am so stiff and my pain is literally symmetrical same on both sides always. They gave me some diclonofec sodium before I got the results and that helps a ton, but I was only given a few and they refused to refill it. I spent sunday cleaning all day and yesterday and today I am paying for it with such pain and stiffness, I broke down crying yesterday.
My lyme doctor said it could be the lyme or bartonella and had added Ceftin to my current antibiotics of Rifabutin and Biaxin but a month later nothing.
My aunt has RA and she said it sounds like it but if the rheumatologist says no and regular doctors will tell me to see a specialist what do I do.. I can barely work and all I do all day is type and write.. please help :'(



And this is why my Lyme Doctor said to me: (which I am a little confused abuot because she said first to stop and then the second thing she mentions is totally different)

Hi Sarah,

If you are not getting results, I would stop antibiotics at those doses and re-assess everything. Most importantly, assess whether your stress levels diet or air quality (indoor dampness) might play a role. Inflammation is a total body process that occurs when the body's coping mechanisms are exceeded, and many factors contribute. I am certain that Tick Borne Infections are among the causes of your symptoms, but it seems clear that antibiotics alone are adequate to improve your symptoms right now.

I'd say spend a couple of weeks OFF antibiotics working on getting your gut health as good as you can and your stress levels as low as you can and then we can decide what to do next. I am using this protocol a lot bc it seems safe and seems to be effective in many people with chronic tick-related issues:


THis protocol was designed by a microbiologist named WIll Wiegman and
is available on facebook. Like all effective treatments for long
standing Tick Borne Infection, it has not been proven through
clinical trials. However, it seems to me to be intuitively and
intellectually appealing and uses lower doses of antibiotics. THIs
means it gives your system and your gut more time to recover
between doses. You MUST avoid alcohol, even in herbal tinctures
while taking this protocol.

FOr 2 weeks before starting this, take 2 TBSP of fresh ground flax seeds ground in a smoothie every day. This will give you the amydigalin you need to for this protocol: https://www.facebook.com/notes/will-wiegman/wiegmanpulsed-protocol-for-lyme-disease-including-congenital-lymeand-vaccine-i/10154253003723139/ 5. https://www.facebook.com/notes/will-wiegman/wiegman-pulsedprotocol-for-lyme-disease-including-congenital-lyme-and-vaccinei/10154253003723139/

Every 10th day take Ivermectin, 4 at once. NOT on the day you
take the other meds.

Use Minocycline and Tinidazole every OTHER day with food but
not dairy
with tinidazole stop alcohol entirely, EVEN alcohol based
tinctures.

Candida that sounds familiar... How can you tell if it is muscle versus joint (I know weird question but when I don't move everything stiffens up so it makes me think joint and the joints hurt) I was finally getting better when I was on Mino and rifabutin so she took me off, but I had still had bad symptoms during my period. Then I had a lot of stress and needless to say I would cry at the drop of a pen, no lie. So back on meds I went but she tried me on Biaxin and Rifabutin instead which has helped more than the mino and rifabutin. The pain in my hands and wrists went away when I first started those and then suddenly just started and spread to my elbows (which both pop when I flex them now) knees, ankles. So I set up another apt and that is when she put me on ceftin and said maybe try Levoquen (sp?) to treat the bartonella side if the Ceftin doesn't help. Only thing is now she has changed it up again..

I am at a loss on what to do.. my boyfriend keeps telling me to stop complaining abuot the pain, etc. It is hard...

WalkingbyFaith,

Thank you you have for the most part described me to a T. It started out with the wrists and hands since I type all day at work I noticed it the most. Then the elbows I would put my elbow on something and omg pain, its the inside of it too not the outside like tennis elbow. Then one side started popping the tendon, then the other, and they both do it now. Touching hurts, when I lift or use my muscles I feel it in my elbows.

Fingers at night I wake up and they are completely stiff and if I move them too fast it hurts. When I am sitting and then get up my knees and ankles hurt untl they sort of loosen up. I did test positive for lyme and then bartonella so we know I have both for sure. I had issues and still do occasionally with my feet falling asleep and tingling in my upper back like shoulder pain. That got worse when I was NOT on antibiotics.

I am on birth control so that regulates my hormones most of the time, then that time of the month and I get the headache from hell, front, back, jaw, neck, eyes, extremely tired, this NEVER happened to me before all of this.

Because I am on rifabutin and biaxin and she added ceftin which helps lyme but told me Levoquen or whatever it is called would be good if its bartonella I don't know what to do. The fact that that new medicine can cause tendon rupture scares the crap out of me. I only have a few Diclonofec Sodium tablets left and the Rheumatologist wont renew them so I am saving them I guess, but its been a daily struggle and with it being better when warm I fear the winter.

We have fans in our house when it's hot outside...and the cool breeze makes my nervous system ramp up and also nerve pain.
It's nothing to do with mold.

It happens in our car with the AC as well.

I don't have intolerance to AC, but I do have mold illness. I can tell you a lot about mold.

1) Just because you have symptoms everywhere doesn't mean it isn't mold. New houses can have mold. 2) Inspections/testing based on standard methods are not reliable. 3) The best way to determine if you are being exposed to mold is to have your doctor evaluate you for CIRS using the Shoemaker Protocol and running the lab tests indicated. 4) The ERMI test through Mycometrics is the proper mold testing to do on your home and office. If anything other than the ERMI was done and both home and office have not been tested, then you should not assume that mold cannot be a factor.