thanks for your help.
back on march 14 the the dermatologist found a tick on me. i live in the country so it was no big thing. but i got the elisa test and the western bot.
i had a western bot test that came back positive about two weeks ago.
prior to that, i had an elisa test on march 14 that was borderline negative.
so about 10 weeks went by between the elisa and the western bot.
i guess about 4 weeks after the bite(and the elisa test) i started getting sore muscles, couldnt sleep, felt neurological, symptoms. i thought it was just aches and pains, diet,
but luckily the words of the dermatologist echoed in my head and it dawned on me what it was. that was when i got the western bot and started 3 wks of doxycyclene.
i would say i had it for about 10 weeks before starting doxycyclin. which worked good for about 2 weeks but now on the 3rd week, it doesnt seem to work as well. that is i have some of the symptoms returning, slightly but the muscle aches, brain fog.
I have also been taking some alternative antibiotics such as colloidal silver, herbal tinctures samento/banderol, grapefruit seed extract, zinc lozenges.
for the most part the symptoms are abated but i still feel that lymes is present in my body.
I have some other threads i started that talk a little more about it.
I am looking at doing MMS or the Salt/C regiment after the antibiotics.
Also, i think i may have had some co infection or slight case of lymes for a number of years as i have been suffering from brainfog, and the same aches in my legs at night except they it was only once in a while but it is the same feeling. i have had tick bites over the years so it wouldnt surprise me.
i spoke with an india doctor in north west pa, i believe around hermitage pa. i got his name thru a reference as a lyme literate doc.
Last edited by lightfoot500; 06-17-2012 at 07:19 AM.
There are actually two up there. One does Integrated Medicine and the other does not. I have communicated over email with various people who see both and both seem to have success with treatments, though each treats in a different manner. I take antibiotics and a ton of supplements.
I live in a rural area as well.
In the mean time, hang in there. Do you work? What age range are you? Do you have adequate social support?
Last edited by moderator2; 06-17-2012 at 10:43 AM.
how long have you been taking antibiotics? do i take it you are following a western medicine approach?
are you taking any microbial supplements?
what is your opinion on MMS? have you tried it?
by integrated medicine do you mean wholistic and regular medicinne?
i am 53, i drive a truck over the road, yes, i have some social support.
I am also seeing a female MD,ND in squirrel hill, probably the most prominant one in pgh. she has some exp treading lyme but i dont think she is an LLmd.
My LLMD is Integrated Medicine, which means he uses a combination of eastern and western medicine. I'm on antibiotics and a ton of supplements. He is currently the only doctor I'm dealing with. I'm 29. I started showing symptoms in Oct 2010 and finally got diagnosed with Lyme in April 2011, I didn't start seeing an LLMD until my second relapse in November 2011. Did you find your tick bite? I never found one. Have you been tested for co-infections? I have bartonella and rocky mountain spotted fever.
I have never heard of MMS - what is this? I was seeing and alternative medicine doctor in Oakmont last summer/fall when I had more arthritic symptoms. Once they became more neurological, she and I both decided we needed to find an LLMD. To my knowledge, the one I am seeing is the only ILADS certified one in Western PA. If we lived in Philly, it seems we'd have lot more options! When I was seeing the alternative medicine doctor in Oakmont, we weren't using a specific protocol, just various cocktails of things I can't pronounce and we would follow up with Nutritional Response Testing every 3 weeks to see what needed changed.
Anyway, so now I'm doing essentially the best of both worlds... I have made great improvement but I still have a long way to go. All of my remaining symptoms are neurological so I can't go back to work until those are cleared up. I can't even drive again yet.
my MD/ND is talking about lyme specific colustrum too.. worth a try.
yes, i was at the derm. when they found the tick. but i live in a rural are with cats, so i found several ticks on me. as i say, i wonder if i didnt have a coinfection prior because of a slight ache in my legs for several years as well as brain fog.
MMS is basically an alternative that uses a chemical used in water treatment tablets. you just have to google MMS to learn about it. there is so disinfo about it, but i see lots of good testimonys, i just ordered some and will be starting on it when icome off doxy in a few days. it kills microbes. it has cured malaria, and has been used literally by millions. it is used in african villages where other medicine isnt available. yes, there is disinfo about it, but i also see great testimonial on videos too. i will try it before a pic line and there are just as many if not more people out there who have been ravaged by IV abx and havent been cured of lymes. so why not try this?
also, jeni770 mentioned the salt/c regiment, it seems alot of people are having great success with that. and i would do that before a pic line also.
i tested positive with both Igg and Igc on a test from quest labs. i havent been tested for coinfections. but am considering which lab to go with for that. i dont know if quest tests for coinfections... or if they even know there are coinfections.
Last edited by moderator2; 06-18-2012 at 05:33 AM.
I am doing oral antibiotics, no pic line as of yet. I mentioned it to my LLMD (yes in hermitage) and he uses pic lines as a last resort. He said that you need the antibiotics to kill the bacteria but you need all the supplements to keep the antibiotics from killing you. He actually has it himself. He was diagnosed in the late 80s and quit his hospital practice then when he became stable, went into Integrated Medicine as an LLMD. He really is great. One specific thing I like is that rather than following certain protocols (like MMS or Salt/C) he tailors the cocktail to symptom management. Right now my biggest hurdles are neurological symptoms and a weakened immune system so that's what we're hitting pretty hard. And the herxing is very neurological this time as well.
Just wondering....what specifically are your neuro symptoms? Any balance problems and tingling? laLa
Hello - my neurological symptoms are inner tremors, short term memory loss, stuttering, confusion, disorientation, inability to read long paragraphs because the words float and extreme sensitivity to lights and sounds. I have trouble functioning in group settings because of the noise. I can't multi-task, if I have the TV on and get a text, I have to pause the TV. All of these things come and go at different severities. I have minor balance problems now, they were much worse and I used a wheelchair for a while, if I was not in the chair, I fell frequently. I also had 3 seizures and had days of outer tremors but I'm now taking valium and those have subsided.
I forgot, I did have a ton of tingling in my arms and legs (from the elbow down and from the knee down). That is pretty much gone except for when I play the piano, my hands and fingers swell and tingle.
Last edited by lenabubble; 06-17-2012 at 08:12 PM.
Reason: forgot something
The following user gives a hug of support to lenabubble: lightfoot500 (06-17-2012)
From my understanding, the antibiotics go in and kill off the spirochetes, but the supplements are designed to break the blood brain barrier, so I don't know if that means they're creating a pathway for the abx or not. I really don't understand it but also my "understander" is what's broken.
I have the co-infections Bartonella and Rocky Mountain Spotted Fever. These were discovered on a blood test my LLMD ordered. I have no idea what company was used. I had the blood drawn at my local hospital and I believe they were forwarded elsewhere but I don't know where. The results were sent to my LLMD.
yes, i am interested in LLmd the ind LLMD in hermitage is my first choice. he was nice enought to speak to me ont he phoen over the weekend. i seemed to connect with him.
i am reluctant because it might be one more doctor who wants his own tests and more supplements, etc. but it would be well worth it if he can elliviate microbes.
as i said i wonder if i didnt have others.
can you say what the test $ cost you had done which revealed coinfections of rockymth spotted and bartonella?
Actually I don't know what the tests were. When you meet with him, take all test results with you. He should accept them. All I had to give him was my positive lyme test so he didn't retest me for that. He does a lot of clinical diagnosis. He seems very open to anything you suggest or request. I showed him what I had been taking from Oakmont and he kept some of it and changed some of it. He really does know his stuff. You are talking about the Integrated Medicine doctor right? The other guy up there is a regular GP who happens to have a lot of lyme patients and focuses only on western medicine. I have Highmark BC/BS and all of my tests except my gluten sensitivity test were covered. What I have found is that tests he orders, if done at my local hospital, and Rx are covered, but his office visits and supplements are not. It does get costly, but it's working. Have you had any herx reactions yet?
Well, i dont really feel any herxing as yet. not sure i would feel that on doxycyclene. i do get tired, irratible, and i do feel like my body is fighting something off.
but what does bother me is that it feels like some of the symptoms are returning even though i am on the doxy. today will be the end of the 21 day course. the first 4-5 days i felt better. but then it plateaued and since then the symptoms seem to have a slight gradual return. as thought the lymes are defeating the doxy. not sure if that is true or not. symptoms like cognitive thinking and some aches in the legs.
I will say that i put a small tens unit i have on my leg muscles and that seemed to loosen up my muscles up and give them alot more fluidity.
Also i was talking to a friend who is a doctor about lymes.
she said the lyme might be gone but the body immune system continues to over react. not sure about that.
been looking into colustrum with transfer factor specific to lymes.
did i ask you if you tried it?
Hi Lena, How are you?
I have been off the doxy for about 5-6 days now. still taking the samento/banderol tincture and i like that. it has a soothing feeling on symptoms. also, i was surprised but really found improvement with the homeop, Ledum 1M, i found i wanted to do alot of things, like house work and organizing, which hadnt wanted to deal with prior. i am going to make an appnt with the "integrated" guy in hermitage.. even though he has a waiting list. let me know how your treatment is going, thanks.
Sorry for my absence, I had a rough week with a herx and overdoing it.
I've been herxing a lot on these new meds. I'm glad you're getting in to see the doctor. If you are on the waiting list, they will call you when they have a cancelation. I ended up getting in the next day by pure luck.
I have told the other Pittsburgh guys about you and we're trying to figure out how to get you hooked up with them because I really think you could benefit from communicating with them.
I'm glad you're feeling a bit better and have an energy burst right now. Don't be discouraged if/when the burst ends. This whole disease and treatment is a roller coaster.
i didnt know you could herx on antibiotix.
yes, i would like to talk to people here as well.
even though we both have friended each other ( i believe) we are still unable to send private messages to each other?
last week after i finished the abx and took the dose of ledum 1M i felt really good. now it seems like it is coming back. aches in my legs and brain confusion going on today. i do have more doxy so i am going to start taking some of that again. my problem is i dont know what is herx and what is just lymes returning...
Last edited by lightfoot500; 06-27-2012 at 03:09 PM.
Reason: Please do not post, or request contact information, such as email address, phone or name, per Posting Policy. Thanks.
Oh yes you can definitely herx on abx. Sometimes it is hard to tell which is a herx and which is just lyme symptoms. Technically it doesn't matter except for keeping track on your own of when you are herxing and when it seems that the meds have stopped working. I've been on two different sets of meds and my herxes were different with each set.
Just take things a day at a time, listen to your body, and obey what it tells you. That's the hardest part for me, finding the balance between resting my body when it needs it and trying to stay somewhat active.
Last edited by moderator2; 06-27-2012 at 04:16 PM.