Confused About Progress

I do not know why your LLMD would say not to take AL, although a lot of people's drs seem to confuse me... I obviously don't have the entire picture though.
The cold water under the skin, I have that all over my body and I posted about the past 2 wks. It feels like cold IV fluids under my skin and that neurological.

Id tak AL, though you don't know which co infection, it doesn't treat all of them only babesia. What if you have Bart? Did you have any Bart symptoms, it's not an infection you wmat to leave behind believe me. I'm not trying to scare you just make fire your dr is aggressive enough and not assuming you only have lyme because very rarely does anyone ONLY have lyme. What do you think? There's an A Bart formula....

Post Edited (Maine76) : 4/6/2014 7:32:33 AM (GMT-6)

I was told it was neurological. I get it all over without taking anything, now I'm taking AL but I had it after stopping my 3000mg daily of amox. It's a really weird feeling... For me it feels like cool IV fluids in my arms and legs.

No other antibiotics just teasel root and grapefruit extract and vitamins and suuch. I tested negative for coinfections but my dr and I discussed the possibility of bartonella

Chapelle, do you know how long your doctor plans to treat? When did you begin tx, and have you guys discussed switching up the abx? Bartonella is the pits, if you think you may have be sure to tx it aggressively. I hate Bart.

the only reason why I like the fact that I am only on doxy is bc I am not in agreement with 2 or three antibiotics at once as treatment, especially in the non chronic lyme stage. I am just gathering my thoughts and appreciate your input - and will update you on my next visit which is april 14th!

thank you for your response, mariels. she said that she is watching for the possibility of bartonella bc my feet have always given me trouble. the top of my foot hurts in the morning, and both soles of my feet used to feel tingly when I first got out of bed. now its just my left foot feeling tingly.

do you know if the cold water neuropathy is usually due to lyme or other coinfections? I am going to research it now. its happening again, and I didn't take the grapefruit seed extract this morning. and it also only has been happening when i am outside and only to my face and hands, which are the only parts of my body exposed to the air? I am already taking b12.

I am going to email my LLMD today to see what she says about this.

Chappelle. I think that is cold intolerance? I got that too, and I got unbelievably cold! I was wearing a jacket in my office.

I personally believe the muscle spasms as in muscle in one area is lyme bacteria in the muscle. I think the twitches as in full contraction of a muscle causing body movement is the nerve infected itself and it likely Bartonella. Although Lyme can also cause this.

I think it would be easier to have just Lyme all on its own but from what I read there is likely at least 1 or 2 co-infections... And if anything it is Lyme that is the co-infection to Bartonella!

The main symptoms I attributed to as Bartonella are burning nerves, anxiety, and insomnia. And just general inflammation in particular.

I think all lyme is chronic until the bacteria are taken care of. The only way the antibiotics work initially I think is if the infection is localized only in the skin if that is the case you can hit it hard with antibiotics like doxycycline. But as soon as it is disseminated and had time to get to different parts of the body and you get other symptoms it goes on to becoming a chronic condition. This info came from our famous LLMD. Treatment gets more complex.

So you might want to consider Bartonella? Bartonella usually requires antibiotic combinations.

Also I think it is great if you can stay on just one antibiotic and use the natural cyst busters. I hope that will work for you. I am adding in plaquenil but then eventually I plan on going with the grape fruit seed extract too when my symptoms are silent. But also I think if the immune system is very healthy it can eventually get rid of Bartonella as well.

Mariel - thank you for your encouragement!

thanks lymepickle, I appreciate all of your input.

no, its not cold intolerance, it is probably what maine described as neuropathy. It feels like someone put an iv in me and I feel the coldness running under my skin. That's the best way to put it - but I would take this over pain any day! LOL However - I am taking doxycycline, and it does cause a skin reaction when exposed to the sun, so I am wondering now if this has something to do with it, since it only happens when I am outside, and it is only happening to my face and hands (the only parts of my body exposed)??? interesting thought....

the twitching occurs all over my body - not just in one area.

I have read on some posts that sometimes once the lyme is "taken care of", the coinfections start to show up. That is why I asked about this symptom. I was always concerned as to whether or not I have bartonella - like you said it is more common than not to have a coinfection. I had anxiety, and had insomnia, both of which are now gone.

I am not letting myself freak out. I emailed my LLMD and I am curious as to what she will say. I will be seeing her in less than 2 weeks anyway.

as far as it being chronic lyme - it is very controversial. I have heard both sides of the argument - and I am trying to be positive and want to stick with the "successful" side. I've heard stories where people were wheelchair bound and then were weight lifting again once they beat the disease. I know one person personally who could not walk, and it took almost a year to treat the lyme, and now they are 100% fine. I know another person personally who had to be on IV antibiotics as well and is now totally fine (they obviously were both in the disseminated stage). But the third person I know who was treated for lyme took 2 yrs to get diagnosed. She was only on rocephin for a few months and now does have chronic lyme.

I am young, and was healthy before this happened, and started treatment within 4 months. I believe that a positive attitude attributes to proper healing. I am banking on my immune system to help out here (as lympickle said) - and I plan to beat this. If I don't, then at least I knew I tried with all of my might!!!!

I love your second paragraph!!!! =)

I am afraid of rifampin too, LOL. I do think Zithromax is used for bartonella too though, that I can handle!!

Chapelle bartonellas most up to date tx protocols are:
Rifampin + Zithromax
Rifampin + minocycline
Rifampin + Septra
Rifampin + Septra + Minocycline
Ceftin + Levaquin
Doxy + Levaquin

Bartonella can be a real tough one to get rid of... Zithromax alone is generally just for pediatrics

You have to hit all infections simultaneously or it's like a cat chasing it's tail, says the famous Dr J

Dr H says you must rotate trough different regimens to hit all forms of lyme and co infections



Scary I know... I'm afraid of rifampin too

Post Edited (Maine76) : 4/6/2014 9:40:45 PM (GMT-6)

I am well aware if many side effects as well, being a nurse is why I'm so scared.. Lol ignorance is bliss, though lyme patients seems to be very well informed. As a side note my doc says changing the strategy up before a patient plateaus is very important. My doc believes in cyst phase and then starts pulse therapy with Tindamax or Flagyl.
Now I am not getting all this yet, but I have his power pint presentation that he used to educate other docs at the round table I went to. He was one of the leading presenters.

I'm not trying to overwhelm you but I want to share any info I have if there's a chance you need it or it can help you or anyone.