Entertaining Infectious Disease Appointment

Bicillin works on gram positive bacteria, like Borrelia. I don’t think it does much for Bart because it is gram negative. Some have said it does some, but I don’t know about that.

Bicillin really led to me getting so much better back in 2015. Maybe co infections weren’t active. I can tell you it takes a very big needle to inject it. Over the years, using it off and on, I learned to inject myself (butt). It reall took some getting used to but pic line gave me a horrendous reaction.

running wild said...
An infectious disease doctor I went to today confirmed while the EBV antibodies are always high on my tests, I do not have EBV, based on numerous, negative EBV DNA tests. No surprise there, as Garzie, dcd and others have suggested.

What was entertaining was he spotted Lyme treatment in my past and Lyme test. These were in records I had sent over a week or two ago. I was not going to waste any time mentioning Lyme, but he brought it up, asking me if I had syphilis, based on Bicillin treatment. I simply answered "no," as I did not want to get into the Lyme debate.

He then asked why I had been taking Bicillin, so I simply answered "Lyme." That got him started about how I couldn't have Lyme because it is not found in the area I live (metro-Atlanta). I then told him I have traveled some in my life, and once became lost on a mountain in Bristol, TN while running and had to crawl through brush up hills with only running shorts and shoes on in the summer with deer all over the place. Also, I had played golf in an area near Boston that same summer and had had gotten in woods some there due to some fine gold shots.

Without hesitation, he said "You cannot get Lyme Disease in Tennessee and there is little of it in Boston." HUH?

I used to get irritated. Now, like I did today, I simply said "So you have confirmed I do not have EBV. So is there any chance you know what might be wrong with me?"

He then told me to see a rheumotologist. I didn't bother telling him how many I have already seen and how many autoimmune tests I have taken. It all still points to Lyme, in my mind, and some of you have literally written that.

In two weeks, I have an appointment with LLMD I have seen over the years in Tennessee. Maybe he will have some answers, which may even be considering autoimmune. But, based on what the infectious disease doctor said, at least I won't have to worry about getting Lyme in Tennessee. It's not allowed there.

Idk how u kept your cool lol I dont mean to laugh bt I've been kicked out of the docs office at times for simply stating facts. They get even more pissed if u laugh or smile and remain calm all while putting up a very low subtle debate or facts they seriously hate it when the patient is right. I dont bother mentioning lyme to them anymore either, it's a whole merry go round trust me. Rheumi told me theres no way I can have shoes danlos syndrome and marfan syndrome at the same time as lyme. Excuse me but I used to be super flexible due to the ehlors danlos syndrome bt became super stiff due to lyme and whatever else illness in my body. My neuro told me he knows much about lyme bt laughs at me and said "oh yea everything causes Lyme now" if he knew anything he'd know it can cause nuerapathy instead of telling me he cant do anything for my neuropathy and that constant ringing and tinnitus in my ears is "normal" ....I dnt even bother anymore, best bet is basically self treating

When i went on bicillin my insurance wouldnt cover it. Rite Aid quoted me $2200 for 5 shots.

Then my mom recommended this place to me. Its like less than $600 for 10 shots, and the customer service is awesome. I believe Solaris uses them as well. If you need bicillin and insurance wont cover, absolutely go to them:

https://canshipmeds.com/

running wild said...
Yes. No Lyme near Boston. HA. If there isn't Lyme near Boston, no one should have it most anywhere.

Lymie 24 - Has to be same doctor. Cool Springs-Franklin. Is that same Dr. K you are seeing, fjdrill? He was the first LLMD I saw back in 2013, and I've seen him several times since. Originally, he had a pic line put in and I tried clindamycin. It was too much to handle as I started shaking so bad I couldn't hold the phone to call someone for 10 minutes and fever went up to 105.7. It took an hour to stop shaking and fever stayed high for about 4 hours. Tried it again next day (I had no idea what a herx was then if it was a herx) and similar happened.

I called the LLMD and asked if he could change it to Bcillin. Over time, with other meds thrown in, it did wonders. Was 85% better for all of 2015 and half of 2016. Then heart surgery (sorry I've told this story before). Haven't been the same since heart surgery. It just let Lyme and friends back in. But I find him very caring and really tries to look at a lot of angles. I also went to Biologix last year. While it helped, especially with EBV, something is still hanging on , and those at Biologix still are kind enough to keep coming up with ideas and contacting me. I trust both the LLMD and Biologix. Both are very caring.

And no, you couldn't possibly have gotten Lyme in Lebanon if I couldn't have gotten it in Bristol on a mountain full of deer as I crawled through brush. As the infectious disease doctor said yesterday, there is no Lyme in Tennessee .

Branin - Best move may have bene to tell the infectious disease doctor you are homeless or soon will be if you don't get rid of the Bartonella. And yes, very familiar. So what are you doing now to treat?

Yes, I have been seeing Dr. K for over 4 years. He's a great person and a good Lyme doc. To be fair, he's the only Lyme doc I've ever see. Through my investigation his methods of treatment seem fairly standard among LLMDs. Sometimes my spouse wants to see a different LLMD, but I remain skeptical that would accomplish anything. I'm not opposed to a different viewpoint, but antibiotic treatment is antibiotic treatment.

Unfortunately, I haven't recovered under him. I have had periods of moderate success such as when I first visited him and the first time I tried Disulfiram, but it never stuck. That is frustrating because I want to succeed for my both myself and him. I actually get the feeling he cares about his patients. He has tried to get me to try IV abx in the past, but I'm unconvinced it is superior to oral abx and it seems to carry much more risk. Plus, a big part of me being able to somewhat handle this chronic illness is the ability to sweat, exercise, detox. Not being able to do that with a PICC line in would probably lead to a rapid downfall in my physical and mental well-being. On the other hand, my illness is significantly neurological. Maybe I should give IV a chance. If it worked it would be worth the risk. I haven't seen any evidence that IV abx does much better than oral in chronic Lyme. That's my issue.

Currently, I'm building back up on Disulfiram and I've added some tinctures such as Crypto and Hottunyia. Dr. K wants me to do some IV stuff such as Ozone, Vit C, etc. I likely will try these things soon to see if they help reduce symptoms, however, I am a bit worried about doing too much at once. Over time I have become more and more sensitive to treatment. I feel that I get over-toxified quickly.

Girlie said...
“ He has tried to get me to try IV abx in the past, but I'm unconvinced it is superior to oral abx and it seems to carry much more risk. “


Dr J says he prescribes IV when brain function is really bad and people presenting with ALS, MS.. and/or very serious dysfunction.
(Like Mandy from Under Our Skin)

I've read some doctors think it gets better CNS penetration. I believe I've read others (maybe Dr. Phillips? I'd have to go back and check) aren't convinced it has a better efficacy for persistent illness and is more risky (due to PICC line potential complications). I would do it if I was convinced it would work. Maybe I should try it after 6 years. I do worry I would melt down mentally if I did.

Yes, I've been seeing him since 2017. I'm in somewhat remission. Took the DNA CONNEXIONS test in Dec. Came back negative on everything. In May symptoms slowly creeped back. Middle May I found a tick attached. DR.K put me on Doxy 2 weeks. Added 2 weeks of Moxy. Had a little Herx. Nothing since late June. Going to wait and see if anything shows up. DR .K and staff have been nothing but great.