Aching legs and soles of feet. Bartonella? Phone call with llmd tomorrow.

Sorry for all the posts these last few days! I've been sick for a year and don't feel like I'm on a good treatment plan at all. Partially because I haven't perfected my detox and diet (was drinking alcohol up until a month ago due to depression , I know I know huge mistake) which I am finally 100% committed to!

I have a call with my llmd tomorrow . I am not a huge fan of her and am switching to the M Center in NYC in September but until then I have to be prepared to advocate for what I want.

My main symptoms continue to be extreme pain in calves ( feel like tendons may rupture), soles of feet ( this is getting worse and causes me to limp sometimes). I hear this is a major indicator of batronella but my tests were negative. The tests that are always positive are strep (ASO titer in 400s) and mycoplasma pnemonia. Right now I'm on 2,000mg of pencillin a day to treat the strep. My aches and fatigue are definitely getting worse which means *I think* it could be helping but I have also toyed with a fair amount of herbs these past few weeks including oil of oregano. I also have pain in my chest on and off. In fact my first symptom when I first got sick was what felt like severe heartburn. I also still have swollen tonsils although improving with the pen.

I was on mino for 1.5 months. It seemed to make the heartburn worse but I don't remember herxing or any improvement so my llmd told me to stop. I do think after stopping I felt slightly better. But my strep levels shot back up when on mino since it doesn't target strep.

I tried azithromycin for 1 week. Following that week I started feeling extremely dizzy so I stopped. I then experienced the worse neuropsych herx of my life. I literally couldn't walk a block. I felt as if I was completely out of my own body. I thought I was dying. I couldn't work, get out of bed for over 2 weeks and then it eventually subsided. My tonsils were less inflamed and my aches did feel better I think but it didn't matter because of the head stuff! I'm not sure if it was a herx or side effect ( hard to admit but alcohol was in the mix).

Part of my thinks the zith may have hit something and it is worth trying again but very slowly and with major detox (obviously not drinking). I was thinking of asking her to start with 1x a week and building up from there? The other option is trying the mino again and sticking with it a lot longer and trying to be patient. I know I tolerate the mino okay, I'm just so scared it won't treat whatever this is. But I can always continue with my herbs, try ozone, in addition to this?

Lastly, I believe heavy metal has to be at play here. I had 4 cavities drilled , amalgam removed without a rubber dam, right before I got sick. I still havent done the urine challenge test because I'm scared to take DMSA with amalgams but my llmd thinks a small amount for the test is fine.

Any input, questions I should ask my llmd, abx and/or combos I should request who be much appreciated . Thank you!

Darling, that's what we are here for!! To help you find the answers you need!!! So no problem with a lot of posts. We understand.

I'm sooo very proud of you for making the commitment to not drinking!!!! Congratulations!! I know it's so very hard to deal with depression, but drinking while trying to heal doesn't work out well. So I'm very glad you made the right choice with this. You're a real trooper!! (((hugs)))

Remember that the testing for the co-infections like Bartonella are very poor - worse than it is for Lyme!! So, you have to go by your symptoms.

Mino actually crosses the blood-brain barrier a lot better than most abx, so it's a good choice for these infections because it has very small molecules and can reach into the smaller veins. That was actually the only abx I've ever tried using for these infections - and it was too much for me.

I would encourage you to get your detoxing routines up and going and do many of them. Do you know if you have any of the gene mutations that can make it difficult to detox? They are commonly called MTHFR, but I know there are several other genes that also play a part in our detoxing. Any gene mutations can usually be countered with specific supplements to help you detox easier.

I would most definitely encourage you to start off very slowly so that you can keep up with the detoxing needs of your body without herxing seriously. Binders can be a very effective tool to use, as long as you follow the rules of using it - nothing but water for 2 hours before and nothing but water 2 hours after to avoid it binding to something other than the toxins. There are many more suggestions here (and we can go over whatever you need to on this as well): www.tiredoflyme.com/detox-methods.html

Im also wondering if maybe this rheumy is right and that my issues are mostly related to high ASO ( strep). My levels are 400 which 200 above the normal range for adults. He thinks I could have a strain of rheumatic fever....I can't find much about ASO on this forum but on another website for PANDAS it seems a lot of kids with PANDAs have this titer issue and some aren't able to clear it unless they treat for lyme.

Thanks Traveler. I've been on latitudes for months looking for answers..

darling - I had issues with my esophagus when I was taking the minocycline. I ended up having to eat some food with it. I think this was after a month or two of issues. My LLND wanted me to take it on an empty stomach, but I was worried I was doing some harm to my throat.


The minocycline really helped my 'head' issues - most likely because of it's ability to penetrate the blood/brain barrier.
I'm not 'off balance' anymore - no banging into walls when I walk down the hallway. Don't have the pressure behind my eyes anymore.

If you do decide to do the antibiotics again...go as slow as you need to. If you get prescribed minocycline 100 mg twice daily...you can choose to do 100 mg once daily....and stay at that dose for a couple weeks...see how it goes. But please do a lot of detoxing. If it takes you a longer time to get to the full dose...that is fine.

Every time I backed down on my antibiotics, I didn't call my LLND and ask for permission. I did what I needed to do. At the next appt., I would tell him...that's what I did.

You need to take care of yourself...and if something is too much for you, don't do it.

Checking in and feeling hopeless. After being on 4 months of penicillin VK ( tried to take 2,000 mg a day) my ASO (strep) levels went from 380-320 recently back UP to 329. My rheumy thinks it may be because I wasn't always taking the full amount and he strongly feels strep isn't resistant to Penicillin. But in my research the L forms of strep CAN be resistant. The sad thing is I felt as if I was having windows on the pencillin so I'm SO discouraged. I also still have white looking ulcers on my tonsils but my ENT says they are yeast and not step. The ENT says the strep could be living in my urinary tract, gut , etc.

In any case I just started bicillin shots on Monday and I'm going through the worst herx. My body aches, depression, heartburn, itching skin, dizziness, fatigue it just awful. Part of me thinks I may even be having an allergic reaction which frightens me. Do you think bicillin is stronger and more effective than penicillin? How long should I give it to work? I don't know what to do next. I am so depressed. I'm really starting to fall into a deep dark hole. I have no one in my life who understands. I have to keep my fulltime job in order to pay for docs and I'm hanging on by a thread. I was thinking of trying a new llmd but I dont have the $1500 for a consult. UGH.

No I never went. I wanted to give the penicillin a meaningful chance in hopes my main problem is strep versus lyme as my rhuemy suspected. My llmd from in CT is Rxing the bicillin. My thought was try them for 1-2 months tops and if after that no improvement try the M Center.

Darling,

Welcome. You have come to the right place. Hug and prayers to you that you start feeling better soon. Also congratulations on giving up drinking. Hard to heal with alcohol.

If doctor says it's yeast in throat and it is also living in other parts of your body- that is candida. The candida diet will help you tremendously (you will basically be eating vegetables and lean protein). You can Google Candida diet. It will also make you feel dreadful.

Are you taking a good probitiotic? I would detox, take a good probiotic, start candida diet immediately an start from there.

Feel better. You can do this - you are young and will heal.

Darling,

Candiditis and Thrush (both from yeast/candida overgrowth) can both cause white spots on throat.