so 3 years ago i got pretty sick after i had knee surgery.
was 23 years old at the time and i got vertigo problems and such, as well as lots of food allergies, thyroid problems, that i've had since.
i had lots of tests done, one being a Western Blot which came back boderline positive, mainly the IgG..
So fast forward 3 years later still suffering from food allergies, and some skin allergies, (allergic to clothing sometimes) and psoriasis type stuff, thyroid, etc.)..
seeing a really good doctor for Lyme, who you probably know, but he did another western blot on me and says its positive, with the IgM antibodies coming back more positive than my last test.
the positives for IgM were 31kDa +, 39kDa IND, 41kDa +++, 58kDa +, 66kDa ++ and 83-93kDa ++.. doc said something about 83-93 being pretty specific for lyme.
positives for IgG were 31kDa ++, 39kDa IND, 41kDa +++, 58kDa ++.
i had this test done when i had pneumonia which the doc said can not cause a false positive in the bands he was looking at
and if anything made my immune system produce more antibodies to the lyme because it was hyped up from the pneumonia, thus causing the more positive western blot.
now i dont have the typical lyme symptoms, and the doc said if i've had the lyme since i was small (never remember getting bitten by a tick but played in tall grassy areas a lot)
my immune system has done a heck of a job keeping it at bay.. but i can't help but to have doubts...
i mean, if this doc thinks i have lyme should i trust him? i have had some weird ailments and it would make sense..
just confused, concerned, need some input from people who have been in my boat..
how long does lyme take to go away? i think the main concern was that there's no real clear answers with it...
the doc was saying lots of things can cause problems that lyme can cause, so its hard to say if the lyme is doing it until you get treated, then see what resolves itself.
I'm more concerned with how reliable the western blot is..
i'm sure the doc knows what he's talking about..
just kinda hard to accept when i dont have the classic lyme symptoms.
One thing that really bothers me though and was the first symptom i got was the lightheaded off balance dizzy stuff...
i have periods of 6 months sometimes (can be more or less) where it feels fine, docs originally chalked it up to vestibular neuritis caused by a virus..
but now i'm confused.. having a relapse of it right now and not sure what's caused it..
can lyme cause chronic balance issues? that can get better then get worse?
can anyone offer anything on this subject. thanks a bunch and sorry for the long post.
-------------------- IgM were 31kDa +, 39kDa IND, 41kDa +++, 58kDa +, 66kDa ++ and 83-93kDa ++..
IgG were 31kDa ++, 39kDa IND, 41kDa +++, 58kDa ++. Posts: 30 | From California | Registered: Jul 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Scott, I believe you are going to have to read medical type literature about lyme disease in order to make up your mind whether or not to believe this doctor.
For example, in the Medical Questions forum on LymeNet, at the top of the list of posts, is a post entitled "Dr. C's Western Blot Explanation." You need to read that. Then, you will find out for yourself that the Western Blot test, when it gives a person with lyme symptoms a postive result, is reliable.
Also, read the Dr. Joseph Burrascano Lyme Disease Treatment Guidelines. This is a 33+ page document written for doctors, so it is not an easy read, but it will teach you a lot about lyme disease, its symptoms and coinfections, and how difficult it is to treat.
On pages 9-10 are a list of lyme disease symptoms. See how many you have. If you have a number of them, your chances of having lyme disease are pretty darn good.
I did not have the "typical" lyme disease symptoms either, if you mean saw a tick, had a bulls eye rash, had pain in joints, had a swollen knee, etc.
No, I had severe unexplained muscle weakness that came and went. Like 7 months on and 5 months off. Did that for about 5 years. Then, it came and stayed, along with other symptoms like what appeared to be menopause. I was diagnosed by many doctors as being in menopause.
As time went by, more and more symptoms came. One typical symptom is balance issues. It is caused by one of the lyme co-infections (infections that come along with the lyme disease when you are bit by the tick). I believe it is caused by babesiosis.
It is typical in the beginning for the symptoms to get better and then worse. Each time my extreme muscle weakness left me, I prayed it would never come back again. Then, one day I would wake up and it was back again. It is very strange, and hard to believe it can actually happen this way.
I couldn't hold my mouth open to have my teeth cleaned, it was too strenuous for my jaw muscles. I couldn't hold the phone to talk for more than 30 seconds, my arm would start to hurt from the strain of it, etc.
I went from doctor to doctor for 5 years looking for someone to tell me what was wrong with me. Most doctors will never think of lyme disease. So, they offered me antidepressants, told me I wasn't sick, or told me "We see lots of patients like you."
I was thrilled to get a lyme diagnosis. Maybe once you get more and more symptoms you will become convinced and be happy to try lyme treatment.
Nobody can tell you how long it will take to get you well. This is especially true if you have had lyme for years. Read it in Burrascano. But, with a good doc, I have seen many friends and acquaintances finish their treatment in 1 year.
When you have a relapse of symptoms and can't figure out what caused it, just know that this is typical for lyme disease. Many of us on this board have had that experience. We have answered many previous posters like you who have asked about that.
Lyme is one crazy, odd disease. That is for sure.
Know also that the vast majority of people who have lyme disease also have babesiosis. Read it in Burrascano. I had babesiosis and bartonella along with the lyme disease.
It took 10 years for my diagnosis. But, now, it has been 4 years since I finished my lyme treatment and I am still symptom free, enjoying my life--the same life I had before lyme disease. Every single symptom went away. Every one.
Had I not done the treatment and stuck with it until the end, I would not have my life back. There IS life after lyme disease, and it is a great life. I will never take my health for granted ever again. And, every day I thank God for the lyme doctor who got me well.
Sorry for the long post. Hope you decide to give lyme treatment a try.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Many Lyme patients develop food allergies. I developed a soy allergy and many food sensitivities, including random things like xanthum gum and lemon. My doctor says these can go away with treatment.
I also get dizzy. I don't have ideas to help on that.
I was infected when I was 12. Most of my life I didn't know I was sick. I had pain here and there, but nothing constant until 7 years ago. All our bodies get hit differently by this bug.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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bettyg
Unregistered
posted
welcome scott
terry gave you excellent advise above plus others; i won't repeat it.
read the symptoms lists for lyme and MAJOR CO-INFECTIONS..other diseases the ticks carry:
bartonella, babsiosa, erlichia, rocky mt. spotted fever, etc.
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ----------------------------------------------------
I found Turn the Corner Foundation through the website for the Under Our Skin movie. Here is the link for their website. At the bottom of their webpage there is a link to click if you are interested in getting help finding and LLMD.
I emailed them for help and got a response with the names of over 10 LLMDS in two states in less than a days time. What an incredible blessing! Thought I'd pass it on. By member Aimee, 7.11.09 ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
posted
Thanks both of you for the responses.. they help a lot.
I actually did begin treatment... i'm taking biaxin now for 2 weeks, and some anti-microbial herb drops. the doc also gave me some stuff by researched nutritionals i think.. a
nyway they were transfer factor multi-immune and transfer factor lymeplus...
i guess they're good supplements but i couldn't tolerate them cause they have dairy to which i'm really allergic so had to stop...
so i guess he's starting me out slow.. i always wanted to know, if you dont herx does that mean you dont have lyme? can you herx without knowing it?
also, i think the reason i'm so doubtful is that all my problems (at least i think or docs thought) could be explained by other reasons..
except for the off balance dizziness which they said was Vestibular Neuritis..
which i'm not too sure of since it comes back every so often...
but it stays with me for a while.. the first time for nearly 2 years.. then it went away..
is that possible with lyme? and then for it to come back but be sparked by other things... such a frustrating thing.
i did think it was very interested about Dr. C's talk on Western Blot and how its positive to him if only 1 band comes up..
and i had more than that... it would make sense and i really hope it is lyme to be honest.. then i can treat it, focus on it...
its just hard when you've had your whole life with doctors telling you other reasons for my "weird" problems.
Is it possible for someone like me, or anybody rather, to have their immune system keep this infection at bay only causing certain problems and not others?
and to have such a long time if i was bitten when i was little to have symptoms at 23 years old? i'm now 26.
how do you test for co-infections.. dr. didnt do that yet, but put on paper "consider biofilm treatment next visit", which is 6 weeks from my last one.
i keep playing the game in my head, what if this isn't lyme...
but i really want to trust my doc.. he was pretty positive about me having it..
its just my symptoms are so not like everybody else. ugh.. i know it can vary though.
i should be happy i got a positive western blot huh?
I have to admit i had some people tell me that they thought if you had lyme you must herx, or you dont have it..
i feel like i have so many questions running through my head but i can't think of them all...
so is the treatment i'm on pretty low? the dr. said he wanted to start me off slow because with chronic or long term cases blasting me with antibiotics would just make me sicker...
okay
thanks scott
-------------------- IgM were 31kDa +, 39kDa IND, 41kDa +++, 58kDa +, 66kDa ++ and 83-93kDa ++..
IgG were 31kDa ++, 39kDa IND, 41kDa +++, 58kDa ++. Posts: 30 | From California | Registered: Jul 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Some people don't herx. Some people herx and don't know it is a herx because it is so mild.
It could just be a day when you get played out easily and have to rest before you can go again doing things.
Or, it could just be a day when you feel very, very tired.
Or, it could be 3 or 4 days in a row like what I described above. Then, 3 days that are half as bad.
If the doc doesn't hit you with a lot of antibiotics at high doses all at one time, you likely will not have a bad herx.
I continued to work all through my treatment. I noticed a "bad day" every 28 days, so I marked these on the calendar in advance so I didn't plan anything special for that day. That went on for a few months. That's it.
Yes, be happy you have such a positive Western Blot. It means your body is very aware of the infection and is making antibodies to the disease.
That is such a good thing. For some people, the doc has to get their immune system to "wake up" and realize it needs to start fighting the lyme. That won't be necessary for you.
Without knowing the dosage of Biaxin, we can't say if it is low. But being on one antibiotic only could be considered "low." However, it is a wise way to begin treatment.
As the questions come to your mind, ask them and we will reply.
Posts: 9931 | From Maryland | Registered: Dec 2007
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You have Lyme. Accept it and get to treating it. You might have other infections too. My babesia infection is actually a bigger problem for me than my lyme.
As for the dizziness, that was a really scary symptom. I felt like I had a low blood sugar rush, even though it wasn't low.
That symptom resolved very quickly for me, but others persist.
BTW, I didn't have that symptom until 6 months after my most recent tick bite (I found it attached to me). But I had a positive test prior to that tick encounter and that could have happened 10 years ago.
There are different lyme strains with different symptoms.
Good luck
Posts: 872 | From New York City | Registered: Jun 2008
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posted
JamesNYC, The dizziness you described fits mine to a tee!! I keep getting those low blood sugar "like" attacks. HATE IT!
Been having a lot of dizziness, and brain fog too lately. This is one of my most bothersome symptoms. It makes me feel stupid and I literally can't think straight.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I see you have some good people taking care of you with information in many replies.
I'm sorry that I can't read your post - or any of them right now - my fatigue factor just kicked in - I was just about to zonk out for a while but saw the dizziness in your title. All sorts of vertigo can go along with lyme - some from the sheer effect of lyme as a toxic infection and how that affects the inner ear, other from heart stuff or drops in blood pressure or glucose fluctuations.
The link below is mostly about the inner ear balance system and what can help. I do hope you have a very good LLMD.
posted
TF, is your story in the success stories thread? I'm going to check that out next to see what has worked for people, although everyone is different.
Scott, I'm convinced you have Lyme.
We actually don't know how long my husband was infected with Lyme. We do know that when he got sick he was not likely to have been bitten by a tick at that time.
We figure he had it for years but his immune system was keeping it in check. Then when they had to repeatedly shut down his immune system for a medical test they needed to do repeatedly, the Lyme was free to multiply and make him really ill.
As for me, when we researched his Lyme I realized this was what I'd had for 25 years and been misdiagnosed the whole time. My case is classic.
Yes dizziness was part of my process. comes and goes. When I first got Lyme it was two weeks of a sort of flu followed by months of debilitating fatigue. I was 26. Then remission
About three years later I started with the migratory joint pain and dizziness. Once so bad I almost blacked out. Then problems with rapid heart rate. Don't know how long all that lasted, then remission again.
Then really bad tachycardia, and the meds just made me worse. About 6 months mostly in bed that time. Tachycardia, arrythmias, chest pain, severe shortness of breath.
Once I got better the symptoms would come and go through the years until about 4 years ago when my back went out on me. I've learned to take pain, but it was excruciating.
So here I am 26 years later being treated for Lyme. It's also important for you to understand that the symptoms and severity can be different for each person.
A friend of our was diagnosed with MS, and they found out last year she had Lyme (by a LLMD they took her to) Unfortunately her insurance only paid 1 month of IVS. Surprise... her MS doctors said their treatment was working because her MS was in remission!! Now would it dawn on them it was the lyme treatment that did it?? (I guess not)
Research and find out all you can. In addition to the resources others have given, there are a few books. We have The Lyme Disease Solution which we are reading. Others may have another suggestion they liked. Knowlege is power!
Keeping you in prayer,and wishing you a full recovery.
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
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