fatigue, no energy no improvements past two years, here are my test maybe someone can help me here

Iv had chronic fatigued and exhaustion for almost two years now, It hit me out of no where, I was very active exercising and then thought i had the flu and as those symptoms went away, the fatigue and constant exhaustion have not went away, along with these i developed sleeping problems, which i never had before and indigestion and acid reflex which i never had before and also Im very sensitive to the cold which I never used to be. I have been tested for EVERYTHING these past two years several times, and the only time that shows is positive BAND 41AB with a high count . All regular doctors basically have just brushed me off and said its all in my head for the first year but the fatigue and lack of energy got worst where i cant get through a full day without feeling like i need a nap or im going to collapse from lack of energy. I went to a Chinese herbalist who ordered some test that most doctors do not for example. MY CD8/CD57+LY IS A 52. Normal rage is 60-360 and she told me a Healthy person is around 200 and typically people only with HIV OR LYME have a rage that low, mine being 52, AND MY HIV TEST has been negative, TESTED tons of times. These symptoms started to show MAY OF 2013 I thought it was an Ebstien Barr flarr up possibly, so i didnt get any test done for a few months and it showed that my EBV was negative and old and for the First time showed this postive band P41. This Chinese herbal doctor thinks I have lyme, but two doctors and a infectious disease doctor all brushed everything off and told me its probably some post viral thing and that one day a light swich will randomly go off and ill have my energy back which I think is a bunch of BS, HAS ANYONE TESTED FOR BAND P41 POSTIVE AND HAD A LOW CD57 COUNT WITHOUT TESTING POSITIVE FOR ANY OF STRAINS OF LYME , I am at the point where I DONT KNOW WHO TO SEE, OR WHAT TO DO NEXT , ITS UNREAL

Post Edited (myeezy24) : 4/6/2015 9:53:20 PM (GMT-6)

I do not think anyone here will feel comfortable saying that you do or do not have Lyme. HOWEVER. It is worth looking in to as chronic Lyme becomes more difficult to detect from what I understand.

I was just finally diagnosed this past Tuesday with bands 41, 58, 39 showing and a CD57 of 25 and 1.10. I have been going to doctors and have had ultra sounds and brain mrs and all kinds of stuff and even with my Igenex tests 3 doctors basically threw me out saying three is nothing wrong. They would admit they do not know what the numbers mean but there is nothing wrong - without even discussing symptoms!!! Especially ID doctors. They are the worst for some reason - total denial it seems.

The only thing I can tell you is keep fighting and trying. You will have to find an LLMD - a Lyme Literate Medical Doctor and make an appointment with them. Have patience as well. I made my phone call last October and just got in this week in the end of March! It turned out awesome though and I feel validated, not so crazy, and I feel hopeful for the first time in a while.

You can do this. Plus, stick around here. There are a lot of great people in here that kept me afloat whole I waited. You are on the right track! Keep pushing with patience for yourself!

Myeezy,

I have chronic fatigue as a result of Lyme and a co-infection, Babesia. I also have a number of other symptoms from Lyme and co-infections. It's really challenging to get anything done with severe fatigue. I'm sorry you're going through this!

Any positive Lyme test should be taken seriously since it is so difficult for people with Lyme to produce antibodies due to a suppressed immune system. Any response is significant since it is so hard to produce the antibodies. It sounds like you said your antibodies were high.

There are a number of other reasons why someone will test negative. There may not be any antibodies in the particular blood sample. It represents a particular snapshot in time. The lab may not be adequate. Labcorp and Quest are considered very poor labs for Lyme testing. Many people with Lyme Disease do not test positive there. IGENEX is considered the top lab right now.

http://www.mentalhealthandillness.com/seronegativelymedisease.html

I had a positive ELISA, but no bands. Then, I tested positive on the Western Blot through IGENEX. I was told that I had Parvovirus, among other possibilities, even though I tested negative for Parvovirus and had Lyme antibodies. There is no rationale reason to think I have Parvovirus and not Lyme. I'm treating for Lyme and making progress.

I would highly recommend that you make an appointment with a Lyme Literate Doctor ("LLMD") and get tested through IGENEX. We can help you find an LLMD. You can do a post "Looking for an LLMD Near" Your City. Make sure to enable your email address because we don't post names of doctors on the forum.

Good luck. Please keep us posted.

Hi everyone!! We have several first time posters on this thread!!!

So to Myeezy, Corinnab, and Lymerhealing - Welcome to our community!!!

If any of you haven't read through our "New to Lyme? Start here!" thread yet, please do!! It's packed with important and helpful information!

Myeezy - I didn't test positive for even one band when I started my healing journey!! That's not that uncommon to be honest. With the symptoms that you have, I would say Lyme and other tick-borne infection could most definitely be what's happening. As the others have said, you need to seek out an ILADS (International Lyme and Associated Diseases Society) trained LLMD (Lyme Literate Medical Doctor).

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​


You can also email the Tick-Borne Disease Alliance at​[​​url]​[email protected]​ for LLMD referrals and you can go to ​tbdalliance.org/​​ to learn more about these infections.


You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


​ You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your Lyme journey.​​www.ilads.org/lyme/ILADS_Guidelines.pdf​​

Find out if the are ILADS trained (International Lyme and Associated Diseases Society), if not, I surely wouldn't recommend seeing them. But please do be sure to let us know how the appt goes!!

By all means p 41 is enough. My husband had a bull's eye rash, but was given 5 days of amoxy and when repeated western blott two years later the overall result came out negative with positive band 41. Dont' need to mention that still has reoccuring symptoms.

thanks for all the replies, bmoberg337 how long did it take you once you found the right docotor, to get your energy back to start working out and exercising like normal again? Iv heard from different people weeks to months to years which is very disheartening to hear.

It took 7 months before I got diagnosed and I have now been on antibiotics for 8 months. Unfortunately there has not been much progression with my symptoms. I recently started IM rocephin shots and they seem to be working better than anything so far which make me wonder if IV treatment is the better option at this point.

Everyone's experience and recovery time from this illness varies so it's really hard to tell anyone how long it will take to get better. I think educating yourself as much as you can about Lyme and finding the right doctor are key components to hastening the recovery process.

it really does suck i have talked two 3 different doctors and a infectious disease doctor who were all confused and gave me different options thinking its something viral and they dont know what and i should just have bed rest but bed rest doesnt help at all.My diet this past year has been extremely strict and I see a Chinese herbalist for stuff to take for lyme and my fatigue and energy still hasnt improved. I finally booked an appointment TODAY!! with a real lyme doctor down near albany NY and is the only one within 3 hours of me, he has really good reviews. http://stramcenter.com/ is his website. My appointment is thursday april 30th. The only thing that blows is he doesnt do insurance, you got to pay up front and hope your insurance reimburses you back. The first appointment is going to cost 600 bucks and blood test range from 300 to 1400 the lady told me which is going to suck alot but i am willing to do anything at this point.

update, i got my other blood test back. I got tested for syphilis because from my research the P41 strain only shows up from either LYME or syphilis and that came back negative, Im just now anxiously waiting for my appointment with this lyme literate doctor on april 30th, will give an update again once I see this real lyme doctor