Lyme Disease Support Group

The very first instance of what i now think was my lyme outbreak, was i woke up 4 weeks ago at 5am with soles of feet and palms of hands bright red, burning and itching in extreme way. the itching did not feel like a rash it was more like my skin was too tight and felt like itching from inside. happened overnight only for two nights...and then was downhill on to new and different symptoms every couple days for 2+ weeks (intense headaches, feel of rushing water through body, sensation of a needle poking around one knee, stiff neck, stomach pains (not upset), extreme fatigue, emotional, weak, confused, etc. etc).

Symptoms were ever changing but after about 2+ weeks am feeling somewhat better but still tired and sporadic pressure headaches etc. I had a "positive" western blot from a good lab(two specific bands of IgM, 39&41 and 3 non-specific) and only two IgG. Am fairly sure is a new infection, probably 4-6 weeks before the start of hands/feet.

Some of my MD are saying v likely Lyme and take 30 days of Doxy (have ruled out all autoimmune and other tick borne) others are saying is indeterminate because never heard of same hands/feet symptom with Lyme and because first had a less-reliable western blot test (mechanical) with only 23 on IgM. anyway..hard to make this a short story!

i've now started Doxy regardless, but am just wondering if anyone else feels strongly that the red, burning soles and palms is Lyme linked? Only other explanation seems to be very odd long lasting virus or possibly extreme auto immune response to an allergan (which i have no idea what could be). These MD's are all highly recommended "Lyme Literate" and am dealing in Westchester, NYC and Suffolk County. Any thoughts would be appreciated.

Post edited by: cckk, at: 02/25/2012 01:19 PM

~~~It is my strong opinion that you are positive for Lyme Complex.

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/10012830-get-more-responses-posting- suggestions

~~ For LLDr (Lyme Literate Dr) request, click onto or go to the following …

~ read here the LLDr request instructions …

http://www.mdjunction.com/forums/lyme-disease-support- forums/llmd-info/3866722-instructions-for-lyme-literate-doc- llmd-requests

~ And then go here to make your request …

http://www.mdjunction.com/forums/lyme-disease-support- forums/llmd-info/Itemid=217/func=post/do=reply

~~ Please click to go here, my profile page, and read carefully my "Hello Newbies" for important information and support, then scroll down to and click onto "Read My Diary" for 40 entry shorts, for some more support ...

~ http://www.mdjunction.com/mem/117464

~~ and here are some helpful links …

~ http://www.livinglyme.com/

~ http://www.lduc.org/

~ http://www.lyme-symptoms.com/

~ http://tbdalliance.org/

~ http://lymedisease.org/

``` ~~ from my straight jacket ~~ out on a limb ~~ lookin like a cocoon ~~ hangin by a thread ~~ waitin for a butterfly ~~ under the moon ~~ Lovey-Dovey ~~ Mitchell ```

Post edited by: waxby, at: 05/11/2013 02:58 AM

I am going to ignore him and stick with the other specialist,also LLMD,who prescribed the Doxy. Ive been on 5 days and last night got the same red,burrn,itch on hands and feet as had a month ago. Im assuming is the Herx...anyone know anyway for relief of this?

Thanks again.

Post edited by: cckk, at: 02/25/2012 01:25 PM

I am not sure by reading your posts if you actually are seeing an LMD (Lyme Literate MD) or a plain MD who ran a Western Blot. They are not the same.

A LLMD will not order 30 days of Doxy. It's not long enough. And band 23 is Lyme-specific. Which means you do have Lyme. It is so frustrating to hear every doctor telling people that it is a "false-positive."

The thing is, if your body is making anti-bodies against a bacterium, the bacterium is in your body. And if there is ANY antibody, it means you have it.

Look at it this way: if someone takes a pregnancy test and sees a very faint line, they are still pregnant. There is no middle ground. You either are or you aren't. It's the same with Lyme. Any indication=positive. This disease is more epidemic than the mainstream wants to give room for.

Anyway, all that to say... I feel that you could use some detox possibly, and I would look into Bartonella as a possible co-inf (co-infection). The thing is, co-infx tests are LESS reliable than Lyme tests. Sad but true.

Lyme and it's co-infx are clinical dx (diagnoses). Based on symptoms and physical exam (and test results after these first two criteria), the doctor makes the call. And it HAS to be a LLMD. Traditional docs don't have the training. Not infectious disease doctors, either.

Let us know what you are doing to detox, first of all. And let us know if you need help finding a LLMD. There is a forum specifically for that, so post there as well for that.

Blessings,

Lauren

Did winter ever do that to you before? When my kid first got weird hand rashes, one of the dermatologists insisted she was "doing too many dishes". She was so sick, she could barely get out of bed to get to bathroom. She wasn't doing anything except staying in bed. And nothing had changed in her room or environment, clothing, soap, food, etc. He was a very nice man, but this was not correct.

we found Borrelia, Babesia (WA1) and Bartonella.

It's a long complicated story with lots of weird problems. Weird hand rashes are in the pile. We have problems very strange hand "rashes" that look like "gloves" on hands. No rashes on feet. And it's on the tops of hands. The palm sides have been clear.

The rash always makes very distinct in patterns, there are sharp divisions marking out the pattern from normal skin, most doctors will not believe this. I had a hard time believing it and it was in front of my face, so I took pictures. It's always bilateral, symetric in visual pattern and behavior. I posted the first rash episode under my Profile w/ pictures.

Up until the last couple of episodes, I thought the rashes were a reaction to an inactive ingredient called "povidone"; it's a cross linked polymer used in some drug formulations. But now I'm not so sure.

In the past, the rashes went away after we stopped the drug containing with the povidone. it caught us off guard a couple fo time, but then we watch for it more closely and was able to keep it out.

We couldn't keep it out the last couple of times because 5-ASA meds and zantac were prescribed, but there aren't any that do not contain povidone. Her gut hurt so bad, that we decided to try it and hope for the best. The rash returned and strated getting painful. had to stop. extensive seraching, alternate meds found.

But the rash didn't go awawy this time. And it's acting a little different. Also anotehr long story.

I think you should make SURE you see a doctor who can recognize Lyme disease and co-infections and knows how to treat it.

It's very hard to find these doctors. The only way to find out is to ask as many other experienced patients as possilbe and find out who helped them get better and who did not.

The late stage is nothing to mess with and it will mess up your life if it gets to that point.

To answer, i am definitely seeing Lyme Literate docs..was diagnosed by a LL holistic ENT and confirmed by a LL infectious disease MD sepcializing im Lyme. Was prescribed initially 30 days of Doxy but was actually told by both docs that in their experience would very likely require longer especially because have neuropathic symptoms.

Unfortunately, i also then went to another Lyme specialist infectious disease doc who was less receptive and called for more tests but i will ignore him as the other MDs very helpful. Fairly certain Doxy was started within 6-7 weeks of initial infection, been on Doxy for 7 days today. and although the recurrence yesterday of my neuropathic symptoms (partic itching burning skin, feeling like small shocks on skin etc) is so unpleasant, am actually encouraged i guess since i was told that herxing within first week would be like further confirmation of the diagnosis.

As far as detox, ive only been on doxy one week but i have been doing alot of water with lemon, extra vit. C, yeast probiotic, bacterial probiotic between doxy, fish oil, anti-inflammatory herb/enzyme mix. Ive already been gluten/egg/soy free for several months. I also eat quite "clean" and had been on a gut cleanse regimen (with decreasing amounts of yeast probiotic plus regular probiotic) for the two months prior to symptoms with other supplememts as well.

Also, Today ive been trying epsom salt soaks altho am assuming need to keep that separate from Doxy bc of magnesium absorption. Not sure what else can/should do. Just hoping continued herxing/symptoms do NOT include more of the burning/itching as, of the 40 or so symptoms ive had in past 5 weeks that is by far the worst for me.

Post edited by: cckk, at: 02/26/2012 03:37 PM