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» LymeNet Flash » Questions and Discussion » Medical Questions » Help! Not only am I confused but so is my doctor

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Author Topic: Help! Not only am I confused but so is my doctor
julieam3146
Junior Member
Member # 44018

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Hi everyone. I have been a "weird" case for years and once again I am being introduced to medical students as "this is the one I was telling you about". Brief previous history: always sick as a kid, West Nile Virus, multiple surgeries for cysts and just exploratory, untreatable migraines since age 12, diagnosed with intrahepatic cholestasis during all pregnancies, inflamed pancreas, random high blood pressure, and ehlers-danlos syndome.
The past two years things have gotten odder. I woke up one morning and couldn't get out of bed, went to the doctor and my c-spine and s-spine had spasmed and basically locked, my hips and buttocks were right behind within a week, I was put on muscle relaxers and steroids combining for over 6 months to treat, next came an allergy to cold, then an allergy to sunburns, got bee stung and days later my lymph nodes in my neck swelled up and had to once again be treated with steroids (really steroids for a sunburn?), bells palsy, migraines are worse than ever, random times my legs or arms go numb and can't move them for hours, etc. So I went to the doctor again when my mouth drew up from the bell's palsy. With my odd history she decided to run some tests, here are the results from test 1:
Lyme Disease Antibody:
Lyme AB IGG BY WB: P93, P58, P41, and P28 are positive
P66, P45, P39, P30, P23, P18 are negative
Lyme Ab IgM by WB: P23 is positive
P41, P39 are negative
Was told CDC standards says Lyme is negative

Lupus is Neg, Sjogrens is Neg, TSH is Normal
BUN/Creatine ratio Norm is 8-20 mine 29
ALT Norm is 0-31 mine 35
WBC Norm is 3.4-10.8 mine 22.5
Neutrophils(absolute) Norm is 1.4-7.0 mine 14.0
Lymphs(absolute) norm is 0.7-3.1 mine 5.1
Monocytes(absolute)norm is 0.1-0.9 mone 1.1
Immature grans(ABS) norm 0.0-0.1 mine 0.2

Everything else in test 1 was normal, doctor says CDC says its not Lyme so she would check other things related.. but puts me on 2 weeks of doxycycline anyway

Test 2 results:
All main results that were high are still high but lower than before
Epstein Barr Antibody AB IGG is greater than 600 normal is 0.0-17.9
Epstein Barr Antibody VCA IgM is 36 which is on the equivocal scale
Rocky Mountain Spotted Fever is normal

So the doctor tell me that where I had West Nile as a kid it has probably messed up my immune system but that she honestly has no idea. For some reason I am still stuck on the lyme results and I figured you all may be able to confirm that it is not something I need to worry about or confirm I need more testing or something. Also I have not been bitten by a tick since I was 7 or 8.
Thanks in advance and sorry this is long. [Smile]

Posts: 2 | From Myrtle Beach, SC | Registered: Jun 2014  |  IP: Logged | Report this post to a Moderator
Catgirl
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Band 23 is lyme specific. That means you have it. Good for you for following your gut! Lyme is linked to and associated with so many diseases & illnesses (allopathic don't have a clue). You need a lyme literate MD (LLMD). Go to www.lymediseaseassociation.org and they will email you some names. You can also try here in Seeking a Dr.

There is a really good book you should read that explains lyme, the testing, etc: Cure Unknown. Also: Why can't I get better.

Also, I would quit the steroids if I were you. They are really bad for lyme patients (weakens the immune system).
Welcome Julie am!

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

Posts: 5418 | From earth | Registered: Mar 2011  |  IP: Logged | Report this post to a Moderator
jb151
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1. If i was a Dr i would clinically diagnose this as Lyme just based on symptoms.

2. With the bands you have + it is Lyme IMO.

2. Should get an Igenex test done, Lyme and Co-infections.

3. That length of time on Doxy is not going to do anything for Lyme. I am assuming your were dx 200mg per day as well, which is not enough..

4. You need a LLMD, this Dr doesn't know what he/she is doing.

5. I would also want to get a energetic test done ( Zyto, Biomeridian etc etc). This is tricky though, because results can vary based on the skill of who does it. But, i think it is more accurate than blood tests if done correctly.

6. Need to address the high EBV viral load, as EBV can lead to a lot of issues. I would request Valtrex from your Dr in order to reduce the viral load. MMS will also help reduce the load.

7. Lyme can be dormant for many years. It is very possible that the tick bite at age 7-8 infected you and it is just now starting to cause symptoms. It is also possible that you were bit recently and you did not realize it. But, from what you listed as always being sick as a kid etc etc, i would say that the Lyme was there and it just slowly progressed to where it is now.

Not a Dr, so take it as just my opinion.

Posts: 83 | From East coast | Registered: Jan 2014  |  IP: Logged | Report this post to a Moderator
jb151
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Also, not to scare you but i would also have your kids tested as well. Seeing that you remember a tick bite previous to being pregnant, as well as having symptoms, then it is possible that you passed it to your kids while pregnant.

I would also have your husband tested, as it is sexually transmitted as well (IMO).

Even if they have no symptoms right now i would still get them tested and then treated if shown to be positive.

Posts: 83 | From East coast | Registered: Jan 2014  |  IP: Logged | Report this post to a Moderator
julieam3146
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I will definitely find a doctor who is more experienced with Lyme. jb151 that definitely crossed my mind also, I have four children, my 10 and 7 year olds both have asthma and a history of getting mrsa, my 9 year old has a brain aneurysm, seizures, and migraines, and my 5 year old has had odd symptoms since birth and will not gain weight, she is 29 lbs. I will mention to their doctors also.
Posts: 2 | From Myrtle Beach, SC | Registered: Jun 2014  |  IP: Logged | Report this post to a Moderator
Judie
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Oh dear. Sounds like Lyme.

No further testing for Lyme is really necessary. Any Lyme Literate doc will treat you with your current symptoms and last test results.

Hopefully you can find a doc who can treat your whole family.

A lot of times people don't remember a tick bite.

Once your immune system takes a hit, you can collect co-infections. I have 14 current infections that I'm treating.

Here's a thread on what else to test for:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=127210;p=0#000000

Posts: 2839 | From California | Registered: Jul 2012  |  IP: Logged | Report this post to a Moderator
Carol in PA
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"...doctor says CDC says its not Lyme so she would check other things..."

This is laughable.
The CDC specifications are not intended to diagnose Lyme.

Posts: 6932 | From Lancaster, PA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
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quote:
Originally posted by Carol in PA:
"...doctor says CDC says its not Lyme so she would check other things..."

This is laughable.
The CDC specifications are not intended to diagnose Lyme.

-
It is Lyme, if you ask me. Very few have CDC positive tests. If you have Lyme specific bands (and you do) then you have Lyme.

You will need to travel to find an LLMD. There aren't any in SC. Don't continue to go without real help.

Western Blot Explanation
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

More info on Lyme:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/88555

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

Posts: 94761 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
glm1111
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Check out the PARASITE WARRIORS SUPPORT THREAD here on lymenet. Parasite infection has been the missing link for many with chronic Lyme.

Many ticks are carrying the Filarial Worm co-infection that is now just being recongnized and some LLMDs are using antiparasitics www.lymephotos.com

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

Posts: 6418 | From philadelphia pa | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
dbpei
Frequent Contributor (1K+ posts)
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So sorry you have to live this nightmare, Julie. Steroids will mess up Western Blot results and are definitely not a good idea when you have Lyme - unless you have life threatening symptoms.

I would definitely try to find a LLMD in your area. Post here in "Seeking a Doctor" and include your area in the title.

Also search for a support group here.

http://www.lymenet.org/SupportGroups/

Posts: 2351 | From New England | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
steve1906
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julieam3146, You got a lot of very good advice, you need to find an LLMD. If your doctor suggest you see an "infectious disease doctor" they can’t help you.

There is a very good chance your whole family has Lyme, and maybe some Co-infections from what you noted.

Read this from Doctor B – it will help you understand this nightmare a little better.

http://www.lymenet.org/BurrGuide200810.pdf

Good luck, Steve

--------------------
Everything I say is just my opinion!

Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
GretaM
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You definitely have been exposed to, and definitely have lyme, based on the fact that you have not been treated for it. It doesn't 'go away' on it's own.

That doctor is negligent. Lyme is a clinical diagnosis. It is not based on positive or negative serology.

It is lyme messing up your immune system, not West Nile, although I bet the West Nile did some damage also.

I have ehlers-danlos also. Also had bells palsy.
Lyme greatly affects connective tissue.

Please, do yourself the biggest favour in the world and make an appointment with an LLMD. Your health sounds like it is on the downhill slope.

You will need to start treating as soon as you can.

The two weeks of doxy is useless for lyme. It will be merely bacteriostatic. Won't kill a spirochete at the dose you're at and by itself. (I'm guessing it is 200mg a day)

I don't wish to sound so negative, I am just floored at the doctor's response to you, especially with all your bloodwork. There may even be steam coming from my ears. haha

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
   

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