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Posted 4/2/2013 3:52 PM (GMT 0)
Hello everybody!
I am pretty new to the lyme world and have tons of questions in my brain..
I am hoping some of you could help ;)
I have been ill for the past 12 years. I have seen many doctors and some have agreed that I have chronic fatigue syndrome. I have never been really comfortable with this diagnosis because I feel I am somewhat different from a typical cfs. I don't have Post exhertional malaise, one of (what seems to be) a hallmark of cfs.
Anyways.. three years ago i had a western blot test done. My results were:
IGG
B.Burgdorferi IgG AB WB NEGATIVE
B.Burgdorferi IgG Bands 41Kd
IGM
B.burgdorferi IgM AB WB POSITIVE
B.Burgdorferi IgM Bands 41Kd 23Kd

My doctor told me that it "could" be lyme and he decided to test again two weeks later. My results were then:
IGG
B.Burgdorferi IgG AB WB NEGATIVE
B.Burgdorferi IgG Bands 18Kd
IGM
B.burgdorferi IgM AB WB NEGATIVE
B.Burgdorferi IgM Bands 41Kd

He then told me that I didn't have lyme, that it had been a false positive.
A year later he did the same test and the results were:
IGG
B.Burgdorferi IgG AB WB NEGATIVE
B.Burgdorferi IgG Bands No bands found

IGM
B.burgdorferi IgM AB WB NEGATIVE
B.Burgdorferi IgM Bands 41Kd

I never thought about it again since he was so sure I didn't had Lyme.
After three years, my current doctor decided I should take a new test in a lab in Europe called "Infectolabs" and the results were:
Borrelia Burgdorferi Elispot LTT
Borrelia Burgd Fully Antigen +50 (reference <2)
Borrelia OSP_MIX (OSPA/OSPC/DbpA) +35 (reference <2)
Borrelia LFA-1 (+)2 (reference <2)

He is sure I have Lyme and has prescribed long term antibiotics.
This is when I started researching everything about Lyme!

I have read many critics to this "Infectolabs" test, where they say that it only tests for T-cell response, and that it could be a response to any kind of bacteria, not only borrelia. They say that the results of "Infectolabs" are many times a false positive.

I have gone back to my first Western Blot results, and even though I mostly only have band 41 (the non-specific one) positive, I have also had other bands that seem to be specific to Borrelia (18 and 23) positive.

One of the questions I have is... Why do the bands that came up positive in my first Western blot test, came back negative on the next test preformed only two weeks later? Is it normal that they appear and disappear like that? My first doctor told me it was a false positive, but now, after reading a lot about lyme.. it seems to me that it can't just happen like that. I mean.. if a band comes up positive once.. doesn't it mean that I have that band in my body?

Then.. my next question is if anybody knows anything about Infectolabs.. and has been diagnosed with this test.

Do you think I could have Lyme? Do you think it is almost certain? Do you think you can't really tell from the tests?
I am so lost, but also so happy.
So excited about the possibility of having lyme! After 12 years of not knowing what was wrong in my body.. if it turns out I have Chronic Lyme... I will be closer to treatment, and hopefully to improving!! :)

Thank you in advance for your help! I would really appreciate any answers! :)
Andrea


yeah
Posted 4/2/2013 7:14 PM (GMT 0)
Hi Andrea. Welcome to our group. False positives are rare so if you were CDC positive on the first test, you have Lyme. That doctor should not have questioned it especially since it's so rare to actually be CDC positive with their strict guidelines and all.

My first Western Blot showed no bands positive on the IgM so I recently did one through IGenex and I have bands 31, 34, 41 and 83-93 all positive and 39 IND.

That goes to show you that most labs don't have sensitive enough tests to show Lyme so if you happen to show positive, believe it.

What are your symptoms besides fatigue?
Posted 4/2/2013 7:25 PM (GMT 0)
Have you ever gone to check something out at the register and the scanner for whatever reason can't read the barcode???

That is how Lyme works to inhibit the immune system. The lyme 'barcode' can be there but because it stealthly tries to hide from the immune system it will inhibit antibodies from being produced. The blots all pickup on antibodies. If your immune system cannot see the bacteria - it will not produce antibodies and therefore will not be visible in the blot.
Posted 4/3/2013 1:57 AM (GMT 0)
Like ToddPaul said, your dr. shouldn't have questioned the lyme when your first test was positive, especially because you have symptoms. That's the key! LD is a CLINICAL diagnosis; the blood tests can be used to help solidify the diagnosis in some cases, but a good LLMD (lyme literate MD) will diagnose clinically.

Lyme Disease is the leading cause of CFS. In my personal opinion, CFS is not a diagnosis, it's a list of symptoms. Again, just my opinion.

You need to find a LLMD to be properly treated for LD and possible co-infections. There is info. on that in the "new to lyme" thread on here. Also, you can post a new post with the a title in the subject line such as "looking for a LLMD in ___(State that you are in)___ .
Posted 4/3/2013 10:41 AM (GMT 0)
Thank you very very much for your answers!! I really really appreciate them. And they are just what i wanted to read! :)

Mystery Illness... thanks for you advice! I am currently seeing a doctor that is the one that diagnosed me with Lyme. He is a CFS doctor in Belgium. He thinks I don't have CFS, that I have chronic Lyme and he has suggested a couple of abx for my borrelia and bartonella. All medicines are hard on my body and they make me feel worse, so I wanted to make sure that I had Lyme before I started treatment.. but it seems i do!! yuhuuu!!! :)

Opugirl.. Thank you very very much for you answer. I guess that could explain why in some of my results i got positive bands and in other results i got negative bands... I also guess that since I have been sick so long, my borrelia hides better from my immune system?

ToddPaul.. Thank you for your welcome!! :) It is a wonderful group. i have learnt a lot from it. Yesterday i spent all day reading through it :) There is a lot of interesting info! Lyme is so interesting and there is so much to learn. After 13 years of reading about cfs.. this is all new to me!!
I would like to take the Igenex test.. but I live in Europe and don't think i can from here... And I don't know if you need a doctor's prescription to be able to take it..
Thank you also for your answer, it sounds so good to hear that I have lyme.. :)
My other symptoms besides fatigue are not many... It all started with knee pain and muscle pain, specially in my legs. i was tired.. but not in my brain, just in my muscles. The first years I had periods of feeling perfect, like a normal person, but over the years those periods disappeared and my symptoms have changed. I still have knee pain, always. My muscles hurt, but much less. And I am always tired, but now my brain is tired. These are the symptoms that I have everyday. Then, I have worse periods, normally related to a reaction to something like Vaccines, allergies, antibiotics... when i have these worse periods, i feel a lot of muscle pain and headaches and a profound fatigue. I never get fevers and I have a low body temperature. (when it all started I had low grade fever all day long though).
These are my symptoms.. do you think they fit into lyme? What are you symptoms ToddPaul?

Thank you again for taking the time to read me and help me!!
huggs to you all!!
Andrea
Posted 4/3/2013 3:04 PM (GMT 0)
Joint and muscle pain is the hallmark of Lyme. Fatigue is also. I definitely see your symptoms as being typical Lyme. Also low body temp. is very common with this disease. Lyme doesn't like heat so one theory is that it lowers the body temp. Smart little buggers they are.

I don't really have pain just some left hip stiffness when I sit a certain way for too long. I'm also experiencing light night sweats, itchy bumps and rashes, chills and a general malaise feeling, mild headaches, tingling/burning legs that also feel heavy and tight, etc.

Do you have a doctor there that knows how to treat using ILADS guidelines?
Posted 4/4/2013 10:52 AM (GMT 0)
Thanks again toddpaul!
I ad read that lyme doesn't like hest. And also read that that was a reason to do gentle exercise.
I really don't now what guidelines my doctor uses. But I think they are similar to ilads.(but I still have to study much more about these ilads treatment guideli es) I know he wants me on long term abx. To start with, he has prescribed azitromicine and rifampicin. With some IM B12, some mesalazine, creon, vitC and an immune modulator called 4ME. A whole bunch of stuff!! It scares me a little... That is why I would like to make sure that li have lyme before starting. He is a cfs doctor and seems to be finding lyme in at least 80% of his patients. And to me it sounds a little strange...

How long have you had lyme? Were you diagnosed right away? What were your first symptoms? Do you think you can have lyme with no burning sensations, with no 4week cycling symptoms, with no dramatic worsening of symptoms over 13 years?
I'm sorry for all the questions.... ;) I have so many!! Just if you can and have time to answer... :)
Thanks again for taking the time to answer and help me!
Hugs,
Andrea
Posted 4/4/2013 4:02 PM (GMT 0)
What is mesalazine, creon and 4ME? I'm in the vitamin biz (own a store) yet have never heard of these. Guess they are products unique to your part of tthe world.

I've had Lyme for at least 21 months now. I was bit summer of 2011 by something which I think was a tick because it crawled up my jeans and bit me and I felt a water dripping sensation but shrugged it off as I was just sweating (it was a hot day).

Most of my symptoms started from there with the first being fatigue. I also pulled a tick out of my arm about 20 years ago which followed with a swollen knee and a fever. I felt fine after that but do have some long-standing atypical symptoms which could be attributed to that bite.

I took me about a year to really have any suspicion that it was Lyme because my symptoms started out real slow. I'm also on Rifampin right now along with Doxy. You absolutely don't have to have burning sensations or the cycling to have Lyme. I know someone who suspects Lyme whos symptoms have not gotten worse over the years but all of a sudden it could especially as you get older so treating is a must.

Any more questions I will be glad to try and answer though I'm still pretty new to all this myself.

Posted 4/4/2013 4:02 PM (GMT 0)
Hi Atoska!
Welcome to our community!!
As others have already said, you have had a positive Lyme test, so now it's just a matter of finding a specialist that will give you proper treatment so that you can get back to your life!

If you haven't already, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists (as Lyme rarely occurs by itself), helpful links and pdf's, how to detox when one has these infections, and a list of questions that you can ask any doctor that you are seeking treatment from!

We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge about our infections and the different ways to treat them!

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, you can start a new thread titled something like:"Looking for LLMD in the _______ area." Although 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 also email our long time member, Dan's Mother at:[email protected]

You can also email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

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. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html


Syndromes are only conditions with a specific set of symptoms that no one can pinpoint the cause - so Chronic Fatigue Syndrome is only a set of symptoms that the doc doesn't know what causes it, and in most cases, it's Lyme disease. Why Lyme? Because it's very prevalent in this country, whether doctors choose to recognize it or not, it has the same exact symptoms (& more) as CFS and there's healing from Lyme disease!!!

The questions you are asking above can all be answered pretty simply to be honest. Very few people have the exact same presentation of these diseases because they bacteria 'plays' on each body's weaknesses, so we end up with different symptoms. No one person has them all for the most part...although some fo us try to!! LOL!

It's possible that you didn't recognize the symptoms that you were having over that 13 years period, or that the symptoms that you were having were practically unnoticeable because they were changes that were going on inside of you - in your intestines, liver, kidneys, heart or others. It's also easy for us to wave away concerns with 'it's part of getting older' or similar statements.

And questions - lots of them are a good thing!!! Information is power with these diseases, and there's only one way to learn! Read all that you can and ask questions about the stuff you don't understand! smilewinkgrin
Posted 4/6/2013 8:23 AM (GMT 0)
Hi Toddpaul!
I really don't know much about Creon or Mesazaline. One is suppose to be for your pancreas and the other for the gut. I guess that he has prescribed them knowing that the abx are hard on your gut? I don't know. I think my doctor is very good and knows a lot, but he is not easy or accesible. You can't ask him all the questions I would like.
4ME is, i think, the same thing as Nexavir in the US. A porcine liver extract that is the residual product from the process of vitamin B12 extraction, composed of peptides and amino acids.
I know it has been used for some years in the treatment of CFS with some succes. I don't know why he wants me to take it. It is an immune modulator and an antiviral. I guess it is suppose to help me fight the lyme bacteria and maybe have less of an herx.
Thanks for answering my questions again! I'm getting excited thinking that my symptoms can be due to Lyme. An answer at last!!! :) I am still not 100% sure, I wish I could be sure before starting treatment. But I think the only way to know for sure is to start treatment and see if it helps. If I was in the US I would try and get the Igenex test done. I am so skeptical after so many years of illness! I wish I could just trust the doctors!! :D
How are you doing with the treatment? Are you feeling better? Did you herx?
Thanks again for helping me!! :)

Traveler! Thank you for the welcome and for all the useful information! :) I am going to spend all the morning reading throught all the links and info you gave me. I have already taken a look at the "New to Lyme.." and have learnt a lot. I have been reading almost non-stop for the last weeks! :)
It is very good to find so much info online, videos, conferences... it's great! Thank you!
I live in Spain, so doubt that we have any LLMD here.. I have to trust that my doctor knows what he is doing. For the moment I have to start with two antibiotics, if it turns out that I start feeling a little better and that Lyme seems to be my problem, I will maybe consider travelling to the US to visit one of your good LLMD's!! My mother is american and i have travelled many times to California.. maybe I got bit there since Lyme is so prevalent??
I hope this is a turning point in my life! Like you say... there is healing for Lyme disease!! That sound soo good! Music in my ears after so many years of CFS with no treatments out there.
How long have you been sick traveler? How long between when you got sick and when you got your diagnosis?

Thanks again both of you for taking the time to read me and help me!! i really really apreciate it!
Big hugs,
Andrea
Posted 4/7/2013 1:11 AM (GMT 0)
Hi Andrea,
LOL! You sure sound upbeat!! That's wonderful! :-)
My 'story' is a bit different. My first tick-borne infection that we know of was Rocky Mountain Spotted Fever when I was 7 years old, and I 'collected' them over the course of my life until I was 44 years old - which is when I finally got a diagnosis also.

I didn't get adequate treatment until I was 48, and I've been in treatment for almost 3 years now - but I think I may have finally come to the point where I'm "only" living with the damage that was done all those years I didn't get the treatment I desperately needed. We are playing the waiting game eyes to see if any of my symptoms will return indicating that I'm not done with my treatments - but so far so good!!! turn

LOL! Not a very heart warming story, but it's true and unfortunately not all that uncommon.
Posted 4/9/2013 9:52 AM (GMT 0)
Hi Traveler!! I try to be upbeat! :) Even if, as you probably know, it is hard sometimes. But when you see the light at the end of the tunnel, even if it is still very far away.. it is a good moment! :)
Wow! three years on treatment! How long did you have herx? Did you change abx over the years? What were your most bothering symptoms before you got diagnosed? What are the symptoms that have improved? What is the damage that was done during all those years with no diagnosis and that now you have to live with?
More and more questions!! hehe..
I have been sick since I was 17. I got sick after a year of leaving in the US, California. My grandparents had a house at Lake Tahoe. i have been reading that it is a place with a lot of Lyme.
And I just turned 30 the other day! I hate it! hehe.. I wanted to be well by 30! Now.. I want to be well before I turn 31! :) Or at least on the right track!
In Spain nobody has even heard of Lyme!! Knowing how mistreated it is in the US... imagine in Spain!!
Thanks again for all your help! :)
I'm happy to hear that treatment has worked for you. Even if it has taken you soo long.. Too long...
Hugs,
Andrea
Posted 4/9/2013 8:21 PM (GMT 0)
I agree, even if that light at the end of the tunnel is still very far away, it's a good moment!

LOL!! questions are a good thing!! So ask away!! :-)

When I tried using abx for 12 months, it was one long herx until I finally said "Enough!! I'm going home to die now." and I meant it. Everything was wrong. I had all but the 'male only' symptoms and only the less severe heart issues, but I lived with everything else on a grand scale. I even started having true seizures. I just kept getting worse and worse on abx. only treatment.

It wasn't until I turned to Holistic medicine that I started to heal. Once I started with this doc, she told me I wasn't to herx for more than 3 days -after that it was doing more damage to my body than good. That was hard to keep from happening, especially at the beginning of each treatment, but I kept at it. I had to back down on dosages and even stop treatments altogether several times in order to control the herx.

I had all but 20 of the symptoms on the 'Master Symptom list' for Lyme, mostly they were the more serious heart issues and the male issues that I didn't have. :-) The most bothersome issues? I would have to say it was the lack of cognitive functioning - no working memory (short or long term), speech issues (stuttering, not being able to understand the spoken word), not being able to follow even simple patterns like when threading skewers for making kabobs, getting lost and not being able to figure out where the door out was in any given building that I was in - even my own home, but don't leave out the debilitating fatigue, and the pain that no pharma pain meds that I was willing to take could touch.

Everything has improved though!! turn I've even gotten most of my memories back!! :-) I still live with arthritis, some peripheral nerve damage (mainly in my hands/arms and legs/feet), damage to my thyroid and adrenal glands, and I'm sure I'm not the brightest bulb in the box due to the severity of the cognitive issues I had - but I'm happy that I'm here and can live a life I want!

Almost 3 years ago now, I was feeling so much better that I wanted to get back into dairy goats - so I've been milking again since shortly after we got them, plus all the chores that go along with having livestock including birthing beautiful babies!! We just had ours for this year!! Cute, although they do create a lot of work! LOL! We also have a large garden that we just love working in!! Besides all the fresh from the garden veggies, the time out in the sun and digging in the dirt have been therapy (& one of the things I missed the most when I couldn't tolerate being outside!!) for me.

How did I live with it?? LOL!! Not very well!! LOL!! I complained and whined on here mostly! Detoxing and eating 'right' were a full time job for quite a while when I first started healing. It took most of the time I could be upright to just do those things, then as I healed more, I started researching and found a doc in my area that was a stroke of genius to go to!! Then I started researching how to heal naturally. One thing led to another and now I'm here to help others!! I am now off of all treatments for these diseases and waiting to see if I have any symptoms come back. Exciting times!!!

I can't imagine living anywhere other than here in the U.S., to be honest! It was nearly impossible for me to find a doctor that was willing to even take me on!! By the time I turned to Holistic medicine, I was so ill that I had some of them shy away from me!

My biggest pieces of advice are don't stop looking until you find a treatment that 'works' with your body - whether it's abx & herbs or just Holistic medicine, change doctors if you don't feel like you are getting what you are paying for or don't see improvements, & don't allow a herx to go on. My doc says - and I got in trouble a few times over this! LOL! - don't allow a herx to go on for more than 3 days - yep, 3 days!! After that point she told me - and I've read things that back this up - that healing either slows or stops so that the body can deal with the overload of toxins. If the toxin levels get too high, it can be life threatening.
Posted 4/9/2013 11:02 PM (GMT 0)
azrith and rifampin are a good combo of orals. after treatment western blots start showing lots more antibodies.
i would take the antibiotics and get on the road to healing
good luck to you, dont be scared, just go with the flow, do what you gotta do.
Posted 5/29/2013 7:57 AM (GMT 0)
Hi Atoska,

I didn't see this post before, just stumbled on it by accident...

I don't know if you still visit the forum?

I'm Belgian, and I'm seeing the same dr as you are. How is the treatment going so far? Any change?
Be sure you detox well, cause he doesn't give much info on that.

He follows ILADS guidelines, that's what always written on the reports he sends to me. 'Treatment following ILADS guidelines'.

Hope you're doing fine...

MarieLS

Posted 6/11/2013 8:40 AM (GMT 0)
Hi MarieLS! Tanks for your answer! We're you also diagnosed with cfs before lyme? How did KDM diagnose u with lyme? With infectolabs? How long have you been on treatment? Do you feel better? I am on my third week of treatment and feel no changes yet... Still doing the same things I use to. What is your treatment! What do u do for detox? Hehehe.. Lots of questions! I also just stumbled upon my thread, I hand,t visited other forum in some time.
Thanks snspeedracer and traveller for your answers also! I hope you are all doing good!
Hugs from Rome ;)
Posted 6/14/2013 8:41 AM (GMT 0)
Hi Atoska!

no, not really diagnosed with cfs, it was easier and much quicker for the drs to say it was all caused by the Hodgkin's Lymphoma I had when I was 15,5. Drs saw those 2 words on my file, and that was the immediate conclusion, without even listening to my symptoms. Or to just say 'you're a unique case, we don't know', or 'I think you might have a depression'.

I was diagnosed with redlabs for Bart, and with Infectolab for Lyme. I suppose you too with Infectolabs?

I started treatment in August 2012, but there have been some complications with detoxing and inflammation, so no improvement yet... but he says that he has very good results with his patients.
It's good that you're up to doing the things you did before!!

How long have you been seeing him? I love it that he has this immense determination to find out what's wrong with his patients. I've been with him for more than 3 years now. He discovered a lot of things going wrong, while others would say that I'm just fine...

My treatment has been adapted regularly: first azythromycin+minocyclin+plaquenil, then tetralysal+rifampicin, then tetralysal+azythromycin, now I'm supposed to start Ketek. GC-maf also, and the usual supplements: B12 injections, lypospheric vit c, lactoferrin, some supplements against inflammation and medication for digestive support/problems.

For detox: epsom foot baths, Psyllium/Bentonite clay shakes, coffee enema's, dry skin brushing, lots of water (with lemon and stevia), I just reactivated my membership for unlimited sauna and hammam visits, and I'm sure I'm forgetting things... smilewinkgrin

What are you on?

That's a big trip: Rome-Brussels... (for me it's a 40 mile drive, that sometimes takes me 2 hours because of traffic, but I won't complain thinking about the trip you have to make) but I think they are well-organized... I hear so many different languages when sitting in his waiting room...

Never been to Rome, but it's on the list - warm weather most of the time!!

 

Posted 6/28/2013 5:48 PM (GMT 0)
Hi Marie!!
Sorry for the delay in answering.. i was on vacation!! yuhuuu!!! I needed and deserved them! ;)
I am sorry to read that you had lymphoma when you were 15 years old. It is horrible. And yeah.. doctors are sometimes awful. At the beginning of my illness I cried and cried after listening to what doctors had to say. I was 16 years old and couldn't believe how incompetent they were. Now days, I try not to listen to the doctors I know I don't have to listen to.

If you were never told you had CFS.. how come you decided to see Meirleir? I also think he is a wonderful doctor, he really knows a lot and, like you say, has an immense determination to find out what is wrong with his patients. Have you seen his latest videos? Each one with a different subject, and you probably understand them all! I have to wait until they are translated to be able to watch them! They are great.

I have been visiting him for no more than 6 months and have been on his treatment for a little more than a month. Right now I am taking Rifampicina and acytromicina and B12 and 4ME inyections. So far, no changes!

I was also diagnosed with redlabs for Bart and with Infectolabs for lyme. What were your results? I had grey zone for Bart and high results for Infectolabs for Lyme. (50 +, 30+ and 2+).

What kind of complications did you have with detoxing and inflammation? When did they start? What have you been doing these 3 years you have been seeing Meirleir? Do you feel you have improved a little? What are and were your main symptoms?

It is true that he is having very good results with his patients. i know some spanish patients that are doing very very good ( I am spanish even if i live in Rome ;) )
I hope he will be able to help me too! I hope I have lyme, I don't know why, but after so many years of diagnosis, treatments and tries and failures... I am sceptical.. and don't really believe I have lyme. But I hope, wish, want to!!! :D

Yes, it is a big trip from Rome to Brussels, but I know some people that travel from the US!! From California! My trip is a wink of an eye compared to them! hehe. And I have to say that I like going to Brussels. I get to go on a small vacation, I have some friends there and I love to see dotors! hehe.. it sounds funny, but really, they give me hope and strength to keep fighting!

hammam baths and saunas sound sooo good! I am not doing anything for detox so far. I have my next visit with KDM on late July, I will ask him about detox.

Rome has warm weather.. but not always!! This winter was cold, it even snowed.. and even if you can wear shorts everyday now.. it is not the summer we are use to ;)

Hope you get to come some day. It is a wonderful city full of history and stories!
Posted 6/29/2013 11:47 PM (GMT 0)

Hi Atoska,

can you send me your email address by pm? you can mail me by clicking on the blue envelope under my name, or find it in my profile. I'll mail you my answers. It's not that I don't want to post it, but I'm paranoid in protecting my dr... lol.

:-)  

Marie

Posted 4/15/2014 5:00 AM (GMT 0)
Atoska, how are you doing? Do you have an update on yiur treatment and progress? Like yiuni was given the labels fibro and cfs. In my heart I just knew these were dx when drs finally belived you were sick but ciuld nit figure out why. I have been sick ten years. Would like to kmow how you are doing, yiu seem to be ahead of me aboyt a year. Im starting zyth and seltra this week, looks like 12 week trwatment. 3 months ago was on amoxy for 6 weeks.
Posted 4/15/2014 5:06 PM (GMT 0)
Hi Roxie 60! Unfortunately I can't say that I am any better:(
I started taking oral abx 10 months ago, but very low doses. I think my doctor isn't comfortable prescribing higher ones, which I believe I might need.
After 7 months on oral abx with no improvements I started to doubt my diagnosis and sent my blood to Igenex. I received a positive result for the CDC and Igenex with 5 positive bands and one IND, so I think there is no doubt now that I have lyme!! :)
After my doctor saw these results he prescribed IV abx for three months. 6 weeks of rocephine and 6 weeks of azitromicine. I have been feeling worse since I started them.. more fatigued, brain fog, eye pain, double vision... i still have one more month on this protocol and am still hoping to see some results! In the clinic where I receive IV I have met quite a few people that have made huge improvements. I just think that in my case he is maybe not hitting the right point. I think I have some confections like Babesia that keep coming up negative through PCR but I have some symptoms for. I think I need to treat those to feel some relief.
How are you feeling? did you feel any improvement during your treatment with amoxy? I would love to hear about your progress! What are your symptoms? Are you experiencing any kind of herx? Do you have any confections?
Hugs,
Andrea
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