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» LymeNet Flash » Questions and Discussion » Medical Questions » Just Diagnosed with lyme after 7 1/2 years

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Author Topic: Just Diagnosed with lyme after 7 1/2 years
Suebear
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I just have one question today if anyone can help me. I completed a 4 week round of doxy at the end of September. Since then my joints started to ache. I am now in severe pain it travels from place to place. Hands are locking up. Wake in the night crying with my hips, feet, etc. This happened about 3 years ago, I saw a rumitodologist and he said it was viral, gave me celebrex and sent me on my way, it cleared after about 3 months. Can anyone recommend some type of pain relief? I will share my story another time (several surgeries, many specialists, etc.) for now I am just looking for some relief from my joint pain. Any suggestions would be appreciated. Thanks,
Suebear

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Catgirl
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It sounds like you were misdiagnosed (like most of us here). Lyme is so complex. Proper treatment for lyme and co infections helps get rid of the pain.

If you haven't already, you need to find an LLMD (lyme literate MD). I would search for one whose had ILADS training/affiliation (International Lyme and Associated Diseases Society). ILADs is cutting edge when it comes to lyme. You can go to www.lymediseaseassociation.org and they will email you some names. Also, you can post here in Seeking for a doc in your area.

In the interim, change your diet (it will help with the pain). Eliminate dairy, gluten (wheat, etc), sugar and processed food. I would also eat low fat (helps me).

I would also read Burrascano's treatment guidelines for lyme:

http://www.lymediseaseresource.com/Burrascano.html

There is also a great book that explains lyme: Cure Unknown (Weintraub).

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

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Lymetoo
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You obviously STILL HAVE LYME .. find an LLMD and GET TREATED!!!

Lyme info:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=088555;p=0

I use Curcumin for pain. Are you still on Celebrex?

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

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Keebler
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-
Today, for pain relief: Magnesium; other suggestion in links below.

ASAP: get to a real lyme literate ILADS educated doctor. I'm sorry to be the one to share this detail, still, it's important to know:

How just doxycycline (or other antibiotics, alone) can cause chronic lyme:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=120369;p=0

Topic: replication within cystic forms of lyme
-

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Keebler
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-
Liver support is the first place to look toward for some pain relief. See the MAGNESIUM post here . . . and also get some good quality FISH OIL:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.


http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/24039

Topic: Looking for long term pain management
-

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Keebler
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-
You mention several surgeries. If steroids were involved (more often than not) that could also explain some things. As you ask typical doctors now for pain relief, keep this in mind: Avoid Steroids.


http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/100984?#000000

Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123939;p=0

Topic: Minor surgery and steriods - complications from steroids that were not supposed to be administered.
-

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Keebler
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-
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.

WESTERN BLOT - and other tests are EXPLAINED HERE


http://www.anapsid.org/lyme/lymeseroneg.html

Reasons for False Negative (Seronegative) Test Results in Lyme Disease


http://publichealthalert.org/uploads/2013_6.pdf

Public Health Alert (PHA) is a newspaper committed to researching and investigating Lyme Disease and other chronic illnesses

Laboratory Tests and Diagnosis for Lyme Disease and Co-infections - June 2013

- by Armin Schwarzbach, M.D., Ph.D. - Five Pages


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=013239;p=0

What is a LLMD? LL ND? What is ILADS?

WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.

Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
-

[ 02-01-2014, 02:55 PM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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-
Sue,

I know this is a lot to take in. Just step by step. For now, some massage, a warm (not hot) bath. Turmeric . . . all that can help.

This book may be a excellent reference for you, too, as you figure out which way to go. Take care.

NEW BOOK OUT THIS WEEK

http://www.huffingtonpost.com/c-m-rubin/the-global-search-for-edu_b_4244055.html

The Global Search for Education: The 300,000 - Tick-Borne Disease

INTERVIEW with Author (of book below) - Nov. 9, 2013


http://www.amazon.com/s/ref=nb_sb_noss_2/184-1715542-5541137?url=search-alias%3Daps&field-keywords=lyme%2C%20Horowitz

Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease (Nov. 2013)

- by a leading ILADS LLMD


http://katiecouric.com/videos/category/100913-daniel-radcliffe-lyme-disease/

Katie Couric TV program interviews two doctors & patients

Chronic Lyme Disease - Oct. 9, 2013

Two clips - notice the huge difference between the ILADS doctor (author of the book above) and the IDSA doctor

-(general comment for those who are new to all this) . . . but one may not be able to catch the serious errors from the ID doctor in the interview. This is why it's good to have an ILADS LLMD. They know far more about lyme.

ILADS: www.ilads.org
--

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map1131
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Sue, I hope you have found our Kentuckiana Lyme Support group? I am one of the co-founders.

If not: www.kentuckyindianalymesupport.org

You are welcome to make contact with me thru with this website and the private message icon(two people & envelope) or you can also contact us thru the website.

Sorry, you entered the lyme world.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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Crawgir1
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Surgery seems to activate Lyme in my case; I had seven surgeries over a 2 year period 2009-2010, and with each successive surgery, I failed to bounce back longer and longer. I believe the combo of anesthesia, surgery, drugs etc. got my Lyme into high gear.

By the time I had my last surgery, I knew something was seriously wrong, my knees were killing me and I was so fatigued I could hardly function. That is when I took my healthcare into my own hands, found Lymenet.org and got the resources I needed to get diagnosed and treated.

I hope you take the advice of these wise Lymies and get a LLMD that will help you asap.

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gmb
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Suebear,

Gabapentin has helped some of us with that shooting nerve pain. I take 600mg before bedtime. But you need to take it all the time to be effective.

good luck

gmb

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Carmen
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Clearly you still have lyme disease. I received doxy just over 4 years ago after being bitten by a tick. It took quite a while for mine to resurface but it did after a very stressful summer of allergies.

You can get a clear cut diagnosis by someone who does darkfield live blood analysis and who is familiar with lyme and make sure they know how to see it before you go. They must know how to see lyme in the blood. It is a fraction of the cost of the blood tests and is pretty accurate.

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Lymetoo
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Where is Suebear?

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

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Suebear
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I'm here. Had to go to bed. I work during the day and by the time I dinner done, I am done too.

Thanks for all the advice. I am a little overwhelmed right now. All day at work I have shooting pains, basically feels like my bones are breaking, it is random and different body parts, but my hands are most affected. Anyway, thanks for all the advice. I am just a little overwhelmed after almost 8 years of misdiagnosis and now to actually know what has been the cause of my problems. I have been treated for the last year for PTSD and been taking low dosed of zanax and prozac. Obviously only small doses of anything is all that can be tolerated. If these are bad, please let me know.

I will start the diet right away. I did have a seven month bout with yeast and the only thing that helped was diet. I was given diflucan daily and nystatin by the quart. But only diet change helped.

Thanks everyone for responding to my post. Today I am just tired and overwhelmed. I will be having only VA medical coverage. I don't know what that can get me. My exhusband of 13 years thought I was crazy and faking seizures and brain fog. Now I am a single Mom, just trying to get by. No extra money now for a good Doctor. I am going to cook dinner and rest.

God Bless you guys for answering my question. I am going to try a couple of things and get my diet changed ASAP.

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Suebear
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I am probably going to vent a little, cause you guys know what I have dealt with. I have taken steroids in the past, very bad reaction. Now I understand why. My doctor has given me hydrocodone, how does that affect lyme? I am afraid to take that. I just finished 30 days of celebrex. At this point I am just........tired. My doctor said "I'm sorry" the State called me after my titer came back and said I have had this from a past tick bite. Makes perfect since. My first tick bite was in Missouri, since every doctor I know says there is not lyme in KY. I have been a tick magnet since. Is that common. I know of 3 times after the initial bite that I have had ticks on me. nymph on my foot, 3 deer ticks on my belly and hundreds after a walk on a nature trail. Strange thing this lyme is indeed.
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Suebear
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My hope is that when I can get into see a VA doctor, they can test me for co-infections, with all the contact I have had and all the symptoms, I'm sure that lyme is not the only one I have. I see that others actually have approved treatment options. Is this correct?
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Lymetoo
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You are right about the DIET .. you can take all the meds in the world but if the diet doesn't change, the yeast will remain.

Xanax and prozac are not good .. but you may need them in order to cope. Just be aware of the problems associated with them.

I would suggest taking the hydrocodone only when the pain gets to be too much. I take curcumin, glucosamine and MSM for pain. I'm unable to take any pain meds or OTC pain meds.

I doubt a VA Dr will help you.. but it's worth a try.

God bless you as a struggling single mom who is ill.. I feel for you!!

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

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Suebear
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Thanks for the information. These meds were prescribed by my doctor treating me for PTSD, she was very understanding and you could tell it clicked for her when she found out about the lyme.

The two things the xanax helps greatly with is the "burning mouth syndrome" and the tingling and numbness in my arms and hands. Before I started taking it these two things were constant. Now I rarely have either of them. I only take up to 1mg a day, usually .5mg per day unless I have problems sleeping, which right now I can hardly stay awake, so no problem with sleeping.

I really do not think the prozac is needed as I don't feel and never have felt depressed (until I started reading about lyme disease, lol).

I am going to look up curcumin and MSM, I know about the glucosamine.

Thanks for your advice.

God Bless,
Suebear

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Suebear
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quote:
Originally posted by Keebler:
-
Today, for pain relief: Magnesium; other suggestion in links below.

ASAP: get to a real lyme literate ILADS educated doctor. I'm sorry to be the one to share this detail, still, it's important to know:

How just doxycycline (or other antibiotics, alone) can cause chronic lyme:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=120369;p=0

Topic: replication within cystic forms of lyme
-


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Lymetoo
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Check out Swanson's Vitamins for excellent prices on the NOW brand.

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

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Suebear
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Interesting about the antibiotics. I worked for 7 months at a facility that packaged raw antibiotics (powder form). I became very sick while working there. I had swelling and blistering on the lips and face, Eyes red and swollen, trouble breathing, severe brain fog and rectal bleeding. My doctor gave me steroid injections and oral steroids for when I had asthma like symptoms. I developed a major yeast infection. This lead to concerns of aids, cancer, etc. I ended up at the infectious disease doctor with no answers. Needless to say I had to stop working there. But the antibiotic exposure really did a number on what I now know was the lyme.
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Nancy L
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I had severe muscle aches in my shoulder and arm, migrating around, neck ache, and numbness/tingling all down one arm and hand.

After reading a lot, I took tumeric (curcumin)(the spice in curry)2 350mg tablets a day (Source Naturals) and 2 Kyolic garlic capsules twice a day (600mg each), and that controlled the inflammation & got rid the worse symptoms within a couple of weeks.

I used some of both the Dr. B's guidelines and added Japanese Knotweed and Andrographis (but this I don't take regularly now, as it bothered me sometimes).

I have controlled my symptoms except some hand numbness but I have a long way to go. Have added some immune-stimulating herbs and vitamins.

There is good information available, like on this site. And people to support us. Best of luck.

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Suebear
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Thank you Nancy L
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Catgirl
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Suebear, unfortunately, lyme patients quickly discover that standard docs (including VA docs) don't even know the symptoms for lyme, and can't connect the dots with the symptoms and a real live patient standing right in front of them.

The reason for this is due to the bad guidelines the idsa puts out. All allopathic docs (and insurance companies) follow them, even though the guidelines are antiquated and flat out wrong. So all of these docs just band aid diagnose it as something else, and prescribe stuff like prozac, prilosec, etc.--everything but what is truly needed to attack lyme and company.

So we are forced to find lyme literate MDs on our own (LLMDs). The best ones follow ILADS protocols. ILADS stands for the International Lyme and Associated Diseases Society. They are cutting edge when it comes to lyme and company. You might want to watch Under Our Skin. There is a free download. It helps to explain the whole lyme situation. http://www.hulu.com/watch/268761

Also, there is a great book called: Cure Unknown, (Weintraub) that explains it all.

The majority of lyme patients pay for treatment themselves and submit their labs to their insurance companies. Fortunately, some of the labs and meds are covered. Unfortunately, we have to pay out of pocket for the rest of it. Most people cannot afford this. Many of us find a way. I had to realize that something had to give, and my health was more important than anything.

One of the most important things that I've found along my journey through lyme has been discovering the connection of parasites with lyme. It was stated at the 2012 ILADS conference that "Parasites are THE NUMBER ONE CO INFECTION." That means we all have them. I didn't want to believe this for the longest time, as I was raised to believe only 3rd world countries have them. Wrong.

Unfortunately, western medicine is lacking big time when it comes to not just lyme, but parasites as well. If I had it to do all over again, I would have started treating for parasites asap. There are lots of herbal formulas on the market to help do this (humaworm, parastroy, etc).

You might want to check out THE PARASITE WARRIORS SUPPORT THREAD here on Lymenet. It's full of great info from people who took the plunge and discovered they have parasites. The more parasites I get rid of, the better I feel.

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

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Crawgir1
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Before I was diagnosed with Lyme, my neurologist put me on Cymbalta. It's a wonderful drug, classified as an antidepressant, but he prescribed it for the intense pain I was suffering.

He put me on a large dose, 90 mg, and I was on it for years. It really reduced my pain, and I guess it helped with depression. I had to go off it when my divorce cancelled my insurance, it's very expensive. I'd go back on it again if I could afford it.

I hope you get the help you need; it is expensive to have to pay out of pocket for Lyme treatment.

Posts: 123 | From Pawleys Island SC | Registered: Mar 2013  |  IP: Logged | Report this post to a Moderator
   

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