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» LymeNet Flash » Questions and Discussion » Medical Questions » Persistent symptoms after treatment - what to do?

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Author Topic: Persistent symptoms after treatment - what to do?
captainO
Junior Member
Member # 26382

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I scheduled an appointment for a physical because I had been feeling very unwell for a couple months - headaches, fatigue, just a general feeling of not being healthy. I had also seen a cardiologist a month before because I was experiencing heart palpitations. My knees were also swollen, especially my right knee.

I tested positive for Lyme:

30, 41, and 58 IGG reactive
23, 41 IGM reactive

I completed a 6 week course of Cefuroxime about 2 weeks ago. I feel much better mentally, have not experienced any heart palpitations since week 2 of antibiotics, and the vague unhealthy feeling is gone.

However, the knee situation only got about 50% better. I really used to enjoy taking walks and being active. I cannot do these things now without lots of ibuprofen. I feel like I progressed from 34 years old to 70 years old overnight.

My MD says a small amount of people have lingering joint issues for years after the Lyme disease has been successfully treated. I have spent quite a bit of time reading study after study, and I feel nervous about the wait and see approach we are taking.

My MD also says that based on my Western Blot results, my infection is a new one so the 6 week course of antibiotics is sufficient. Based on my symptom and exposure timeline, I am not so sure about this either.

Posts: 9 | From VA | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
LightAtTheEnd
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Your doctor is wrong. You still have Lyme if you still have symptoms.

The book Cure Unknown by Pamela Weintraub and the DVD Under Our Skin explain why it is that your doctor and most medical professionals are badly misinformed about Lyme disease.

You were treated for far to short a time with too low a dose. The test does show you've been exposed to Lyme, but not when it started. Your symptoms are a better indicator of that. A negative Lyme test proves nothing.

You need to find an LLMD as soon as possible and get proper treatment. If you go to other doctors, they will give you the runaround or tell you it is all in your head.

I got treated within 10 weeks of my tick bite, but I am still fighting Lyme over a year later.

--------------------
Don't forget to laugh! And when you're going through hell, keep going!

Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009.

Posts: 756 | From Inside the tunnel | Registered: Jan 2010  |  IP: Logged | Report this post to a Moderator
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157

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Listen to lightattheend. We have all been there. I was told lyme disease does not exist in my state and dismissed by 6 doctors. The longer you go untreated the harder it is to cure. It is really important that you see an LLMD (lyme literate medical doctor) as soon as possible. You can get help on this site to find the closest one to you.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
Geneal
Frequent Contributor (5K+ posts)
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Hmmmm. I treated for almost 3 years prior to remission.

I also had bartonella and babesia.

Please go to Seeking a Doctor section and post your state and name.

Someone can direct you to a Lyme Literate Medical Doctor (LLMD).

Your doc doesn't seem to know enough to help you get well.

Does he even know about co-infections?

Trust your wellness with someone who specializes in Tick Borne Diseases.

Hugs,

Geneal

Posts: 6250 | From Louisiana | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
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You don't have persistent symptoms AFTER treatment, you are still having symptoms due to lack of PROPER treatment. Sorry. Really. You are not the first nor (sadly) will you be the last to have a doctor who is not adequately educated about the stealth nature of the spirochete that causes lyme.

the 6 week course of antibiotics is NOT sufficient. Successful treatment can take a year - or a few years. And, often, lyme is not the only stealth infection involved.

Find a LLMD, one who is ILADS-educated. Those terms are explained in the "Controversy" article to be posted next.
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

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-
* This explains WHY you need an ILADS LLMD or ILADS LL ND (naturopathic doctor) to guide your treatment protocol.

www.clinicaladvisor.com/Controversy-continues-to-fuel-the-Lyme-War/article/117160/

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - 2007

" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."

". . . If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . . ."

- Full article at link above.

=======================

http://cassia.org/checklist.htm

Symptom checklist for lyme.

=================

http://cassia.org/essay.htm

When to Suspect Lyme - by John D. Bleiweiss, M.D.

====================

www.ilads.org

ILADS

====================

www.igenex.com

IGENEX - testing for various tick-borne infections (tests are best determined by a LLMD)

====================

Dr C's Western Blot explanation is discussed here:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077

=====================

In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=069911#000000

TIMACA #6911 posted 03 August, 2008

I would encourage EVERY person who has received a lyme diagnosis to get the following tests.

- at link.

=======================

http://www.lymepa.org/html/dr__j__burrascano_september_20_0.html

Burrascano's Powerpoint SLIDE presentation 9-20-08

------------

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses

Dr. Burrascano's Treatment Guidelines (2008) - 37 pages

------------
As important as any supplements, sections regarding self-care:

Go to page 27 for SUPPORTIVE THERAPY & the CERTAIN ABSOLUTE RULES

and also pages 31-32 for advice on a safe, non-aerobic exercise plan and physical rehabilitation.

----------------------
This is included in Burrascano's Guidelines, but you may want to be able to refer to it separately, too:

http://www.lymepa.org/Nutritional_Supplements.pdf

** Nutritional Supplements in Disseminated Lyme Disease **

J.J. Burrascano, Jr., MD (2008) - Four pages

======================

http://tinyurl.com/5crsjv

CURE UNKNOWN: Inside the Lyme Epidemic (2008) - by Pamela Weintraub

This details what an entire family went through. Having this knowledge of their journey will help others to get better, faster treatment.

http://www.cureunknown.com

=======================

http://www.underourskin.com

Documentary: UNDER OUR SKIN

DVD is $35. and worth every penny. It explains a lot about the politics of lyme.
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
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-
http://www.lymenet.org/SupportGroups/UnitedStates/

Locate your area lyme SUPPORT GROUP for suggestions in finding a LLMD and adjunct LL professionals.

They may also have literature or DVDs of ILADS seminars to share.

=====================

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=forum&f=2&submit=Go

SEEKING A DOCTOR Forum
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
captainO
Junior Member
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Arg. This is intimidating. Thank you to everyone who has responded! I have Tricare (military insurance), so I am not sure I will be able to find a Lyme doctor who accepts my insurance.
Posts: 9 | From VA | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
Siciliano
Frequent Contributor (1K+ posts)
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Hi, [hi] CaptainO, my husband recently retired from the Air Force as a Colonel and we have the same insurance, Tricare. Ours is Tricare Standard. We also have the MOAA (Military Officers Assoc.) Mediplus as a secondary insurance. Which you may also want to look into.

You will have NO problems at all when going to a lyme Dr.

Tricare has covered every office appointment and paid for my lyme tests--Quest and LabCorp. My Dr. tested me for everything on Quest and LabCorp and the bill came to over $4000.00 and my portion was about $110! And, since we met our deductible on Mediplus---they pay the $110.00 so I pay nothing!

I also had the Igenex done and because I wanted several things checked out--it cost me $750.00. I plan on making a claim to Tricare to see if they will pay any of it, I am confident that they will.

Even if a Dr does NOT accept Tricare--you can still file the claim yourself and they will pay for it and you'll have a small co-payment.

Also, my Dr. prescribed me Mepron which is an antibiotic and Tricare paid it and I had a $9.00 co-pay on it. So, if your Dr. gives you antibiotics, no problem with Tricare, they will pay for it and you'll have a small co-pay. Again, Mediplus paid the $9.00 co-pay so I paid nothing!

On antibiotics--with Tricare---for Name Brands my co-pay is $9.00 and for generic meds it is $3.00.

I also have a list of LLMDs in VA that I will be happy to send to you. You will not have any problems finding a Dr. that accepts Tricare in VA.

We lived in VA while my husband was at War College and at the Pentagon and I never once had a problem with Drs. in VA accepting Tricare.

So, don't worry about it at all. You will be able to see a Dr. with no problems at all. We are really blessed with our military insurance--it is the BEST!

Let me know if there is anything I can do for you--anytime. [Smile]

--------------------
I'm sorry but I am no longer accepting any private messages due to my own battle with lyme.

Posts: 3897 | From New Hampshire | Registered: Jun 2008  |  IP: Logged | Report this post to a Moderator
17hens
Frequent Contributor (1K+ posts)
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Wow, captainO, you did come to the right place!

I wish I had found this place AND this advice when I was at the point you are now.

Don't linger, RUN (or should I say hobble) to an LLMD!!

--------------------
"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26

bit 4/09, diagnosed 1/10

Posts: 3043 | From PA | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
s0ngbird1962
LymeNet Contributor
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17hens, my thoughts exactly. Wished I would have found this place for my son when he was at the stage captainO was in.

I believed my son's pedi about the lingering joint issues, thought he'd be ok.

But within a year things progressed, other symptoms emerged, the worst was when he began experiencing episodes of total visual loss.

Sought an LLMD then, and after 10 months of proper treatment he appears to be cured.

Please seek an LLMD, you will save yourself alot of unnecessary suffering, also treating so soon gives you the best chance of cure.

--------------------
Mom to a 5 year old lymie....
Taking it one day at a time.

Posts: 182 | From Ipswich, MA | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
   

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