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» LymeNet Flash » Questions and Discussion » Medical Questions » Dr. S. H. Left Me A Message Today...

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Author Topic: Dr. S. H. Left Me A Message Today...
Marline
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I missed his call and he said that my test results were not positive or negative, that it's borderline, to call him back tomorrow so he can tell me what my next step is. I am so lost and scared now, because I am 3 months pregnant now. Does anyone know anything about having lyme borderline means?
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ArtistDi
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Sure, it means you are "a little bit pregnant."
In other words, your body has tested positive
to the testing.

If you were purely negative, you may not want to
think lyme, but the dx is based on clinical
points and trial antibiotic. I am sure that the
llmd will discuss your case more, especially since you really are "a little bit pregnant."

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savebabe
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It is very important you get on the correct meds to prevent the transmission of lyme to your baby.
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Aniek
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Marline,

Many people do not have clear test results. Dr. B has had tremendous success in treating pregnant women to prevent transmission to the child.

If you haven't, make sure you raise this concern with your doctor. You can even mention that you heard Dr. B has a special protocol he used on pregnant women. Your doctor may be willing to talk to him about it, if he isn't experienced with treating pregnant women.

I know it's scary. But you are taking the right steps.

--------------------
"When there is pain, there are no words." - Toni Morrison

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Lymetoo
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When you get the copy of the test results, post the positive bands here.

--------------------
--Lymetutu--
Opinions, not medical advice!

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CD57
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Marline -- I see Dr S.H. too. He's good -- he will know what to do for you. He's in contact with all the east coast docs. You will be in good hands -- congratulations!!

What led you to be tested, curious?

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AP
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Have you gotten ahold of him?

--------------------
Sometimes when I say Oh, Im fine I want someone to look me in the eyes & say tell the truth

Myspace: http://tinyurl.com/5p64ed

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Marline
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I am still waiting for his call, he should call me back today. My symptoms started last year, I went neuro to neuro to find out what was wrong, I did mri's of brain and c-spine they were all clear, but my symptoms came and went 3 times and I knew something had to be wrong with my body, I finally came to these boards and decided to see Dr. S.H. Especially because I am pregnant, I took things more seriously.
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Marline
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My doctor just called me and said that my band 39 was positive, and he wants me to start on amoxcillian tomorrow for 10 days and to re-test the blood test again and he can determine if I have it fully or not and if I do then I can start on other medication. I am scared to death now.
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Lymetoo
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quote:
Originally posted by Marline:
My doctor just called me and said that my band 39 was positive....

Then you have Lyme....just my humble opinion based on the facts. I'm so sorry, but amoxicillin should help protect the baby!!!

Western Blot explanation:
http://tinyurl.com/ffn3x

from the above link:

"Band 39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all."

"The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93." ---written by Dr C of MO

Hang in there, sweetie! [group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

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Marline
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He said I need 2 bands positive and mine was only one band 39.
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TerryK
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Dr. S.H. is my LLMD and I can tell you that you can trust his interpretation of a WB. He is also very good at clinical diagnosis. He knows what he is doing.

That said, it is a fact that the WB can be negative and you can still have lyme or another tick infection.

Terry

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Marline
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Thanks everyone, I am going to pick up my medication today and start, my doctor said that my symptoms should start to go away if I indeed to have lyme within the next 10 days. But is amoxy even stong even to take an infection away? Also do I have to give birth to find out if the child is infected? What is the worst case scenario for? I hear that most stuff happen before you even give birth, for example stillborn. Does this mean if you actually give birth you are ok?
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Lymetoo
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You may have more mothers open your thread here if you change the title of your topic to read "Help, is my unborn child in danger?" .. something to get their attention.

I stand by the band 39 interpretation. Nothing else can cause that band to show up.

You may herx when beginning the meds. So if you're feeling WORSE, don't be alarmed.

[group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

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Marline
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So I am on my 5th day of amoxy and the only thing different from last week is that my neck is in the worst pain ever. I am to re-take my blood test in about 10 days.

I also see an infectious disease doctor and he said that no way no how that I have lyme. He said you need 2 bands on igm and 5 bands on igg in order to meet the criteria. I even showed him my paper work and he was not convinced for 1 sec that I have lyme. He said he would even do another blood test and send it to Mayo Clinic to test.

All this stuff is really taking a toll on me, I have one doc saying I do, and I am taking antibiodics for it and and one doc saying no I don't.

So frusterating already.

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sixgoofykids
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Oddly enough, an infectious disease doctor is the least likely to diagnose Lyme.

Have you read the Dr. B guidelines for diagnosis and treatment? You can find them at www.ilads.org.

There are two camps on the treatment of Lyme Disease. You need to read up on them and decide who you are going to go with. It won't work to see two different doctors with two totally different opinions.

I went with the ILADS because they said I can be treated and get better. The ID docs say I have to learn to manage the pain after a month of treatment.

You will feel worse before you feel better if you have Lyme Disease. The tracking criteria used by the CDC says you need EITHER the IgM (two positive bands) or IgG (5 positive bands) to be positive. This tracking criteria was NEVER meant to be used for diagnosis. You can read that on the CDC website. Lyme Diagnosis is clinical ... not based solely on at test.

--------------------
sixgoofykids.blogspot.com

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cootiegirl
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You are going to get an entirely different opinion from the majority of infectious disease doctors. Most are not lyme literate. You have to understand, Marline, that lyme is the kind of bacteria that makes its own rules. It is not the kind of disease that you can obtain a clear cut diagnosis from a test. That why it is so hard to diagnosis and where a lot of the medical community get hung up - they only look at blood tests and CDC guidelines.

If you look at this logically, your bloodtest shows that a band that is significant for lyme is positive, then why do more bands have to show up positive to confirm that? It's like what the other poster said - can a person be 'a little bit pregnant'? There are many 'lymies', myself included, that have rarely tested positive on a bloodtest for lyme. In many of these cases, the longer the bacteria is in the body, the less time it spends in your blood...it's migrated to muscles, cerebral spinal fluid, etc.

Now in your case you have the added element of a pregnancy. The hormonal fluxes of that are challenging enough on your body and your emotions. Listen to your lyme literate physician and the recommended course. One thing that may put your mind a bit at ease, is that the first three months of prenatal development are the most critical in terms of laying the foundation for your baby. In the second and third trimester you are looking at refinement of everything that was put into place in the first three months. In your case, your baby is in a better place in the pregnancy to introduce abx as compared to those earlier weeks.

I have to agree with other posters - for piece of mind you might want to contact Dr. J's office to obtain more info on lyme during pregnancy and his experiences with congenital lyme.
cootiegirl

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Lymetoo
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[QUOTE]Originally posted by Marline:
So I am on my 5th day of amoxy and the only thing different from last week is that my neck is in the worst pain ever.

That is a VERY common Lyme disease symptom. VERY.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Lymetoo
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quote:
Originally posted by cootiegirl:
You are going to get an entirely different opinion from the majority of infectious disease doctors. Most are not lyme literate. You have to understand, Marline, that lyme is the kind of bacteria that makes its own rules. It is not the kind of disease that you can obtain a clear cut diagnosis from a test. That why it is so hard to diagnosis and where a lot of the medical community get hung up - they only look at blood tests and CDC guidelines.

If you look at this logically, your bloodtest shows that a band that is significant for lyme is positive, then why do more bands have to show up positive to confirm that? It's like what the other poster said - can a person be 'a little bit pregnant'? ....................
...................................
I have to agree with other posters - for piece of mind you might want to contact Dr. J's office to obtain more info on lyme during pregnancy and his experiences with congenital lyme.


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elle108
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I am so sorry you're going through this. I have to agree with the other posters that band 39 being positive is all you need to know. The ID docs and anything connected to the Mayo CLinic are NOT going to tell you if you have Lyme or not...they will in all liklihood tell you that you dont have Lyme and will offer no explanation for WHY band 39 is coming up.

Take good care and try to stay calm and focus on having a healthy pregnancy. Amox is pretty safe in pregnancy also.

Elle

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Marline
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I have tht worst headache and neck pain I have ever experienced, could this be the herx reaction?
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cmty
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Marline, I know your anxious and upset about this situation, trust you LLMD, and let him know the symptoms/feelings you are having. I know it's hard, but all this stress in itself, is going to stress your baby. Take care of yourself, trust your LLMD, take a few deep breaths, and try not to be so stressed. That's the best thing you can do for your baby right now. Chris
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Lymetoo
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quote:
Originally posted by Marline:
I have tht worst headache and neck pain I have ever experienced, could this be the herx reaction?

Absolutely sounds like one!
 -

--------------------
--Lymetutu--
Opinions, not medical advice!

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Tincup
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You said..

"I also see an infectious disease doctor and he said that no way no how that I have lyme."

No way he has a brain.

You said.. "He said you need 2 bands on igm and 5 bands on igg in order to meet the criteria."

Tell him you aren't a criteria .. you are a person. Plus.. the criteria is for REPORTING purposes and NOT to be used in a CLINICAL setting. Tell him Hopkins declared 75 percent of people tested HIS way were missed... so GET WITH THE PROGRAM!

You said... "I even showed him my paper work and he was not convinced for 1 sec that I have lyme."

You need to FIRST roll paper work up so it fits IN his ear or he will miss it. If that doesn't work.. tell him to sit on it and MAYBE he can absorb it.. as then it will be closer to his BRAIN!

You said.. "He said he would even do another blood test and send it to Mayo Clinic to test."

Sending blood to the HOLD THE MAYO CLINIC is almost as useful as sending it to the Wizard of OZ for a true read out. Save your money. If he does do it.. it WILL be negative.. and then he will have reason to argue HIS point and insurance can deny you coverage based on the negative test.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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repost deleted...

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Marline
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So I finished my 10 days of amoxy and I still have aches and pains im my body. I am waiting to do another blood test in a week. So what is my doc looking for in this second blood test?

I have my paper work now, my results were:

igm- 39+ 41 IND

igg- 41+ 66+ 39 IND

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Michelle M
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Marline, you poor dear.

I know how maddening and frustrating it is...especially sitting there while an idiot infectious disease doctor condescendingly tells you there is no way you have lyme.

I will tell you this:

There is no way you DON'T have lyme.

And I'm no doctor!!

Here is what your real doctor (LLMD) is doing:

The 10 days of Amoxicillin you took will kill some lyme bacteria. See, lyme bacteria don't just float around in your bloodstream. They like to hide deep in your tissues.

After some of them are killed, some bacterial debris will get recognized by your body and your body will go "AHA!!!" It will then produce some antibodies --- albeit a little late!!! --- to fight what it sees!

You will at that point do another lyme test.

In theory, having "primed" your antibodies by showing them the enemy, you should have a stronger antibody response on your next test.

It's possible you could have a LOT more positives.

Not guaranteed, of course, but highly possible.

Personally, I would love to see it happen, just so you could slap your ID doctor with it alongside his head, and say "So THAT'S the test of a person without lyme, huh? Is THAT what you would have done to my baby?"

But I digress.

You mustn't worry. You're in great hands. Don't let anyone talk you out of them.

Michelle

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Lymetoo
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quote:
Originally posted by Lymetoo:
quote:
Originally posted by Marline:
My doctor just called me and said that my band 39 was positive....

Then you have Lyme....just my humble opinion based on the facts. I'm so sorry, but amoxicillin should help protect the baby!!!

Western Blot explanation:
http://tinyurl.com/ffn3x

from the above link:

"Band 39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all."

"The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93." ---written by Dr C of MO

Hang in there, sweetie! [group hug]



--------------------
--Lymetutu--
Opinions, not medical advice!

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Lymetoo
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Tincup,
 -

Marline, read every word Michelle and Tincup wrote. They are RIGHT ON.

--------------------
--Lymetutu--
Opinions, not medical advice!

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onthemend
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Very sorry to hear all of this, Marline, but you are speaking to a big group of people who have all been around this block a good number of times (perhaps not the pregnancy part).

I'm 2 1/2 years ill, 9 months diagnosed. I won't go through all of my details/history. But I'll cut to this chase:

Stick with your truly LLMD - don't be distracted by others. I live in the metro New York area, went all the way through Columbia Neurology and then a specialized MS clinic. My Lyme diagnosis by an LLMD in furthest NJ and $2.99 of abx/month saved my life.

After I started feeling ill, it took me a full year to realize the dismal state of medical practice as regards Lyme (Previously living in a Dr. Marcus Welby world.) You don't have the time to learn that lesson, so take the Clif notes from all of us.

There is quite a bit of info out there which you can research to help yourself make informed decisions. But the LLMD is first and foremost. You sound like you have a good one - don't get confused by the rest of the 'noise'.

Best of Luck. Easy to say, and not to do - believe me I know - but you've got to try to get sleep, keep a steady frame of mind, try not to burden your system further by so much stress. I know it's hard. But try. We'll be sending you strenth.

A Mom Myself -

onthemend

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Lymetoo
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***You don't have the time to learn that lesson, so take the Clif notes from all of us.***

Exactly! How are you doing, Marline?

--------------------
--Lymetutu--
Opinions, not medical advice!

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Marline
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Thanks for all the replies and I am definetley continuing with my LLMD. My neck right at the base of my head is in excruciating pain, I have headaches all day long, which I don't know if it has to do with the pregnancy or if it's the lyme, my arms and legs sting and burn, they ache and are in pain. The worst pain is the neck.
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GardenLymer
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You poor thing! I was not pregnant w/ lyme -(but I believe you are)...however I do have a daughter w/lyme. Trust me when I say, 1 per household is enough! My hubby didn't know which way to run when we were both bad...

Wise choice to stay w/ LLMD...I am curious why he said you will feel better after the amox - cuz as your finding out - you won't. An LLMD would know this to be true. But, if others here say he's a good one, maybe that's his way of getting rid of the hypochondriacs(sorry-spelling).

Good luck hon - u need to detox some of the die off AFTER your second test - but I'll leave that up to LLMD to tell u what u can take. Or maybe other's that have been preg w/ it can tell u what u can safely take.

But - u can help your neck & headache some now w/ a moist heat wrap. Microwave kind. If u don't have one you can make 1 w/ tube sock & old fashioned rice - leave it loose enough to tie knot in end. Homemade one's smell funny the 1st few times u heat them up, but the bennies of it far outweigh that. Or you could add something that smells good w/ the rice like lavendar. I know how smells can be when your pregnant, lol.

Also - something I learned from a chiro on the east coast for headache was pressure points on both hands - on the fatty part between thumb & forefinger. Squeeze - release, move slightly to another spot - squeeze, release. Do as much as you can take & switch hands. You will usually notice 1 hand is more swelled in that area when u do it (not to look at tho). Do the hand that hurt the most twice. Then do the heat & repeat. Most times it will take it away - occassionally just reduces pain by 1/2...then do it again later in the day. Since your pregger's those things are all I know to give you some relief.

Best wishes to you & your precious angel!

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Lymetoo
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My first "herx" symptom was horrible neck pain....exactly as you describe. There was no "getting away from it." Awful! [shake]

Can you take some aspirin or something?? I have no clue what is allowed for pregnancies these days.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Marline
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Hello,

I am back to give some updates. I am 17 weeks pregnant now and most of the nasty symptoms that I was experiencing before have gone away for the most part.

I did my second set of bloodwork only for the IGM Western Blot, my results were:

IGM

30+
41+
39 IND

So now they want to do the 30/31 KDA test because the person who called me said that if band 30 is positive then they do the 30/31 KDA test, and they will know for sure if it's lyme or something else.

My results the first time around were:

igm- 39+ 41 IND
igg- 41+ 66+ 39 IND

He wants me to start the amoxy again until the results of this test come back.

Any Advice?

Posts: 59 | From california | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
SForsgren
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It is looking more and more positive. If the 30/31 confirmation test does not point to false positive test results due to viral issues, then my guess is that he would treat you further.

--------------------
Be well,
Scott

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lymednva
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I hate to rock the boat here, but in my opinion you need to find another LLMD who is truly Lyme Literate.

Perhaps this one has been good for others, but you are pregnant and need this to be taken seriously now.

You are wasting precious time with all this testing, which is unnecessary, in my opinion.

A good LLMD would have given you a clinical dx by now, based on your symptoms, test results, and reaction to the amoxicillin.

Meanwhile, get in touch with Dr. J in CT. He's the top LLMD for pediatrics. He will know what you need to be doing to protect your baby.

Just my two cents.

--------------------
Lymednva

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Marline
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Dr. S. H. called me yesterday and said that my 30/31 kda confirmation test was a negative and to stop taking the amoxy. He said that means that I don't have lyme. What do you all think?
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CD57
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I've never heard of such a test, but Dr S.H. knows what he's doing -- not only is Lyme literate and part of the Igenex family, but he's totally up to date on all the info that's coming in, all the time.

But...what did he say this test is?

To set your mind at ease, perhaps you could talk to Dr CRJ in CT.

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Marline
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He did the western blot test and band 31 was positive, and he said if either 30 or 31 are positive then they do the 30/31 kda confirmation test. He said if it comes back negative then you don't have it and if it's positive then you do, and in my case it was a negative. Yes, maybe I should connect the doc in Conn.
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TerryK
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Hi Marline,
Is he going to try to figure out what is wrong and treat? He may not think that you have lyme but you obviously have something going on.

He is one smart man and very logical. I think he would be able to help figure out what's going on.

Terry

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kam
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What you are doing is good. It is your body and you do need to do the research and feel comfortable about your treatment.

I, too, see Dr. H and am very thankful for him and trust his knowledge and wisdom.

Not blindly. I asked a lot of questions at first. He took the time to answer them.

He has worked with the lyme doc who treats children on the east coast.

When I heard that doc was retiring, I thought Dr. H would be a good person to step in and take some of his clients.

He keeps up on what is working and what is not at the annual conferences.

When I was dx, an I.D. doc told me not to be surprised if a lot of doctor's don't agree with the dx.

Lyme is a clinical dx. Testing needs improvement.

Even the mayo clinic agreed with this.

you can go to www.lymeblog.com and listen to Amy Tan and others talk to the NY press about their experience with getting a dx and treatment.

Stress is not good for you or the baby.

Sounds like you are beginning to feel less stressed.

The abx usually increase symptoms for me before the symptoms lessen. Not fun. Not what I want from a drug, but that is how it is with this bacteria.

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Marline
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I just wanted to say that I had my baby and I got all the stuff that Dr. S. H wanted me to get to check the baby for lyme. I just wanted to know if there are any signs I can look for in my baby to see if she might have lyme or not?

Thanks

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Lymen
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Marline,
Your test indicates presence of Lyme disease in 99%. I had only one band positive for Lyme and I am treated.

At least the level of certainty in your test is sufficiently high to treat you.

You may want to get 100% certainty but is it worth the effort and additional money?

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TerryK
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Lymen wrote:
quote:
Your test indicates presence of Lyme disease in 99%.
I have never heard that. Could you point out where you got your statistics please?

Marline - remember that for the most part, we are not doctors. If you doubt Dr. H., please get another opinion from an LLMD.
Terry

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jjguitarranch
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My wife and I just lived this nightmare, do a search and you'll see what I mean. So far everything is OK because our LLMD was aggressive and we also had a few phone consults with Dr.J. Maybe you can fax your test results to Dr.J, have a phone consult and see what his impression is. If it was me I would want to be treated for the entire pregnancy for obvious reasons. Also, make sure to complete the full MDL Lyme maternal test when the baby is born. Good Luck and stay positive!
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treepatrol
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quote:
Originally posted by Marline:
So I finished my 10 days of amoxy and I still have aches and pains im my body. I am waiting to do another blood test in a week. So what is my doc looking for in this second blood test?

I have my paper work now, my results were:

igm- 39+ 41 IND

igg- 41+ 66+ 39 IND

I hope this blood test is on the same day or next day after your abx's the closer to the end of abx's the better the chances for antigens and antibodies to be floating free in you for your tests.

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

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