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» LymeNet Flash » Questions and Discussion » Medical Questions » Not sure if lyme related

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Author Topic: Not sure if lyme related
Mommabear
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[ 04-01-2015, 08:17 AM: Message edited by: Mommabear ]

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Keebler
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[Basic detail: lyme confirmed in 2010. Apparently only two short courses of a single antibiotic each - months apart.]

Yes, this could all be due to lyme that was never treated properly to begin with (sorry) &/or other tick-borne infections that were not apparently assessed. (double sorry) -- but there is hope and you CAN get better. Really.

The state in which you live matters greatly, although no state has very informed regular doctors. You don't have to say but just know that if you live in Oregon, you will not find any MD there on any level who can help you.

In some other states, there may be a few who are someone LL (lyme literate) but don't count on it, either. Don't get the run around / roughed up cattle chute treatment by thinking regular MDs or even specialists in the medical system can help. They cannot. They will not. They do not want to.

Do not allow any more invasive, painful testing (like that EMG, they can be brutal) methods that really won't help much - you already KNOW you have pain for crying out loud.

When you see a LLMD, they can assess any need for further specialists / other kinds of testing if required.

Find an ILADS educated LLMD ASAP. Find your local lyme support groups.

Avoid steroids. Avoid lumbar puncture / spinal tap. start here:

www.lymedisease.org -- see their links.

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

What ILADS is

& WHY you need an ILADS-educated, Lyme Literate Doctor (whether LLMD or LL ND, or both)
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Keebler
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You should be assessed for coinfections first by a LLMD -- this can be a clinical assessment &/or some testing.

Since lyme was neither treated correctly nor resolved, you really don't need another lyme test. A clinical evaluation is where to start again, though.

However, if a LLMD does want to run a test (and don't let any other doctor do it as they often do it wrong) . . . keep in mind:

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=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.
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Keebler
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You say: " . . . Dr has me seeing a spine dr next week. . . ." (end quote)

Hope that is not on Monday as you might consider cancelling it. However, you might be able to get some kind of rule-out or pinpoint something that could also be going on or going on as a result of lyme.

Certain imaging may be of help but, really, they so very often don't know how to do this correctly for someone with lyme so I would

call the LLMD closest to you on Monday a.m.

Ask who they might refer patients to for spine assessments.

If the spine specialist (would that be an orthopedic surgeon or a neurologist?) might just happen to be on their "okay, somewhat lyme knowledgeable" - or at least on their "won't throw patients out the window for mentioning lyme" list keep the appointment.

If you think you might have a structural issue, keep it but only allow for testing that will NOT BE INVASIVE.

Do not even whisper lyme. Seriously. Not until you talk with those in your area lyme support groups. Ask about this doctor, specifically.

The reason to not even hint at lyme is that you may need this doctor - in some way along the line. There is a huge risk of major alienation if you bring up lyme. Huge. Risk. And you won't be treated as fairly.

Find out more to see if it might be "safe" to bring that up. Otherwise, keep to his forte and find out what he may be able to help you with, within your boundaries. Respect what he does know, in his circle of practice but know that may not include (not the best word) someone with lyme.

There could be something else, of course.

Remember, no steroids.

Do not let any doctor suddenly twist, pop or snap your spine. With lyme, this can be dangerous and must be done in a certain way. Don't tell him why (if you've not had time to "vet" him yet -- just be clear as he starts a physical exam:

no popping, twisting or snapping spine / neck -- just "because" should be good enough.

And, guard yourself again possible "attitude" when you present with "wandering" or "traveling" pain (very common with lyme). Most doctors will discount this, have never encountered it in their training, & call or treat the patient "wack-o" in various ways.

Hope this one will not - just be prepared and strong within yourself to let any of that just float to the clouds. He / she will have their opinions. Just hear what they are in their context and think about it later. Don't make any decisions right there.

I do hope that if you keep the appointment, you find a competent and inquisitive medical mind with a human heart.
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[ 10-18-2014, 04:01 PM: Message edited by: Keebler ]

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Keebler
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I, as many others here, have a hard time reading solid text. I thought I saw levaquin listed somewhere but my eyes are all spastic now and can't find it. I could only pick out bits and pieces so pardon me if I missed something.

For future posts - so that more can read all you write, it's best to have paragraphs of no more than 3 - or 3.5 finished lines. This will be about 5-6 lines in the composing mode.

Something seems to happen at about 4 lines and it can become a swirling sea of grey for many with neuro-lyme.

Same with lists, although if single words or very short phrases that don't spill out to full sentences, maybe 5-6 things can be groups. See how it looks after posted and then you can go back and edit in white space. Just click onto the tiny paper / pencil icon over the post.

The eyes really need some breathing room - as does the brain.

If you took levaquin or something in that family, learn about the side effects of that/those. The damage can happen long after the drug is taken, too.


http://articles.mercola.com/sites/articles/archive/2012/10/20/fluoroquinolones-side-effects.aspx

Fluoroquinolones - and being "floxxed"
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Keebler
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E coli. I thought I saw that floating around in your first post, too. That can cause ongoing effects.

Be certain that any LLMD you see knows your history with this right away. It will also affect the range of Rx suggested.
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Keebler
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I know there is a lot here for you to wade through. Just take it one step at a time. A key part to your personal research file.

As you have history of E coli, and that can affect kidneys, be mindful that ibuprofen can be very hard on kidneys. Detail here, with great support methods to help. It's all about what we can do to turn it around.


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.
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Keebler
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Koren technique (just Google) is one that some find helpful.

Below Upledger -- Not the same but also "safe" for those with lyme. I found this helpful. It will not have the full effect until lyme is fully addressed, though it may help with some relief along the way.

http://www.upledger.com/content.asp?id=26

UPLEDGER INSTITUTE (particular method)

CranioSacral Therapy - that works with our full frame

[this type is excellent for those with lyme as there is no sudden twisting of the spine or neck - which should never be done with some who deals with lyme]


http://www.upledger.com/findapractitioner.asp

FIND A THERAPIST trained in UPLEDGER TECHNIQUE (not all trained in cranial-sacral also have the visceral training so do ask first.)

Some who are trained in this (such as a D.O. or P.T.) may be covered by your insurance.
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Mommabear
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[ 04-01-2015, 08:17 AM: Message edited by: Mommabear ]

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Mommabear
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[ 04-01-2015, 08:17 AM: Message edited by: Mommabear ]

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Keebler
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None of those three. None come close to being properly educated in matters of lyme / TBD (tick borne disease).

Not when lyme is involved. They are all tied into the IDSA criteria for both diagnostics and treatment.

It is best to first see an ILADS educated LLMD (lyme literate MD) who can best assess the next move. They will know of the specialists who may be more lyme aware than others if you require a specific expert. Often, a LLMD can help clear up so much, though.

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

Differences in the ILADS & the IDSA criteria discussed here -

& WHY you need an ILADS-educated, Lyme Literate Doctor (whether LLMD or LL ND, or both)
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Mommabear
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[ 04-01-2015, 08:18 AM: Message edited by: Mommabear ]

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Keebler
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Just because they say they specialize in lyme does not mean they really do. Please read the articles in the links above first. Then you will have a better frame of reference for selection.

If you can find one who is ILADS-educated (in that they have completed the ILADS physician education program, been to ILADS conferences, know the research of ILADS presenters, etc.), &/or an ILADS member, that is the best start.

They may not necessary need to be a member and every LLMD's treatment plan varies, according to the individual patient and also to the scope of the particular LLMD's expertise . . . but a LLMD must be aware of all the research and issues discussed by ILADS group of LLMDs.

If they cannot tell you the basics of Burrascano's work, for starters, you don't stand a chance.
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Keebler
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With some searching, you may see what a particular doctor may have written - to see their approach, their training, their mindset. For instance, with just a little cross searching, I found the Q & A below.

You may find similar articles for who ever you wonder about. Then, please go back to the ILADS links and read the articles there for frame of reference.

This will help understand the extreme differences in methods - the IDSA approach has failed so many, especially those with chronic lyme -- but also turning new lyme into chronic by neglecting to treat the cystic form.

Antibiotics will not treat the cystic form, or many of the other TBD.

Q & A with an ID doctor who lists lyme & HIV as specialities - lists the IDSA as primary affiliatin. Not ILADS.

Testing outlined, as per IDSA. Oral treatment is outlined, none more than for 30 days, and there is no attention to the cystic form of lyme. No mention of coinfections.

http://www.hcplive.com/publications/internal-medicine-world-report/2014/April-2014/Lyme-Disease-Diagnosis-and-Treatment-A-QandA-with-David-J-Herman-MD-FACP

Excerpts:

. . . There is no data to support IV antibiotic therapy in excess of 30 days. . . .

. . . There is a great deal of hysteria surrounding Lyme disease. . . .

[Just below half way down]

Q: What is chronic Lyme disease and how is it diagnosed?

The post-Lyme disease syndrome refers to nonspecific complaints that persist for months after the treatment of Lyme disease in some patients.

There is no data to support that these symptoms are secondary to active infection, and there is also no data to support that further courses of antibiotics will hasten the resolution of these symptoms, which have sometimes been attributed to “chronic Lyme disease.”

Clinical trials have discovered other explanations for some of these symptoms, such as fibromyalgia, depression, chronic fatigue syndrome, and obstructive sleep apnea (OSA) in some patients. . . .

[full article at link above)

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

To be clear, this is not the kind of doctor I could ever recommend for someone with lyme / TBD.

He is very wrong about "no data supporting chronic lyme" -- there are thousands of pages of documents proving the existence of persistent lyme. The IDSA just chooses to ignore it

So many things in that Q & A interview are just wrong.
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Keebler
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http://www.lymenet.org/SupportGroups/UnitedStates/NewJersey/

New Jersey Lyme Support Groups

members can give you a good idea of LLMDs and other LL specialists in your area.

Then, Google with your specific town and "lyme support" to see if there may be a newer on started that is not in that listing above.

Also connect to:

www.lymedisease.org

Lyme Disease.org -- see their support link to log onto state support groups -- and also referrals

The "Seeking Doctor" forum right here on lymenet:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=forum;f=2;hardset=0;start_point=0;DaysPrune=1000
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Lymetoo
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Mommabear... If you will post in Seeking a Doctor, we will help you find an LLMD near you.

I do know that there aren't any "good" LLMD's in NJ. Many SAY they treat Lyme, but they are clueless. Standard treatment is 2-4 wks and after that, they are "done."

---and YES, all of your symptoms could be (and probably ARE) due to Lyme disease or one of its coinfections.

Tons of "safe" Lyme info:

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

PS .. I think your husband is awesome! [Smile]

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

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Mommabear
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[ 04-01-2015, 08:18 AM: Message edited by: Mommabear ]

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Lymetoo
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MOST doctors do not treat Lyme properly .. Most don't treat it at all.

The basic tests will usually not find it.

What I am saying is that most in NJ travel to other states for real help. If you would like names for NJ, just let me know. I did send you a private message earlier today.

The lab that most patients use is Igenex Lab. www.igenex.com .. Test #188 and 189.

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Keebler
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You might scroll down about 1/3 of the way to see books, documentaries, articles, videos that best explain the differences between the IDSA and ILADS and why it matters greatly:

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

Why you need an ILADS educated LLMD

I suggest starting with articles: Two Standards of Care -- and the one on "Controversies"

then film UNDER OUR SKIN - and the book "Cure Unknown".
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Mommabear
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[ 04-01-2015, 08:18 AM: Message edited by: Mommabear ]

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Keebler
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It's also the collective experience suggesting all this. Many of us have been to dozens of doctors, among them rheumatologists, neurologists, infectious disease specialists - and more.

The reason I suggest for not telling a (non-LL) spine specialist if you see them to assess your back is that there can be other things, of course. And if you mention lyme, they will immediately write you off as a psychiatric case, a "difficult patient" and not offer you even the full range of what else they might do okay.

But they also cannot really properly assess you if lyme is not considered in the picture. But they do not have the training, experience, knowledge or desire to learn about all that.

So we get what tidbits of extraneous detail we can from others when helpful but we have all learned by our mistakes. Mentioning lyme can be the end of being taken seriously in any way at all.

It's not unusual for someone to have been to 30 or 40 doctors by the time they get to someone who not just knows what they should but what to do about it. Years, decades - longer. Full lives can just disappear along the way, with pain, disability, financial ruin among the bits left.

What many of us do here is to try to prevent that from happening to yet another person.

Tick borne disease is like no other medical issue. And the patient must become so well educated just in order to get themselves to someone adequately trained.

Most insurance companies will not cover this (why? they just do not WANT to, they refuse).

That is also explained in the key links above. It brings me pain to explain all this, believe me. Once you can explore the links, it will become clearer. Really. I wish you the best of luck.
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Keebler
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We must have been composing at the same time for posts above.

I appreciate that going outside of your plan is not possible, financially. I've never been able to access a LLMD or LL ND for more than a few consults. So, there are other ways to approach this. Various other ways - but outside of & beyond the regular medical / insurance systems.

Still, the ILADS approach and research must be studied so that you know all the bases are covered, however that may be. The science of lyme, of other TBD must be understood if there is to be success.

I hope as you explore the links you will find some way to make this all work. Take care.
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Mommabear
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[ 04-01-2015, 08:18 AM: Message edited by: Mommabear ]

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Keebler
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Being a straight shooter will be of little help if a doctor is simply not educated in the matter, unable to provide treatment. Or if they are firmly opposed, as with the IDSA member doctors.

No matter how much pride and success one has from past experience of "straight shooting" - we aren't in Kansas anymore.

It's whole different world. The medical system we thought had us covered never really did, not where lyme is considered. It never was the end of the rainbow but we just didn't know in time.

It's like taking an electric car to a Chevy mechanic and DEMANDING they fix it. They just can't. No matter how straight of a shooter you are, it's not going to happen. You have to find the doctors who are already up to speed, on the right track.

Lyme / TBD is not a subject taught in medical school - beyond a few erroneous misconceptions. So most doctors simply have no background until they, or a family member, are tossed into the spin cycle. Then they learn. And they learn with ILADS minded doctors who have gone through the same thing - and the LL researchers.

So, we ask around to those who know such doctors who have stepped beyond their basic training. Hopefully, there may be someone on your insurance plan who is at least lyme "friendly" and who could help in some ways, at least.

For those, [if they have the freedom in their business arrangements] we all hope they will consider the ILADS Physical Training course but it can take a while to come up to speed.

Even some doctors who may want to help are simply prohibited. Some clinics will not allow their doctors to stray from the IDSA criteria / guidelines.

I hope you will be able to read / watch the links as the background in those is essential in figuring out how to proceed. The links provided are so very important, I hope they help. Good luck.
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Mommabear
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[ 04-01-2015, 08:19 AM: Message edited by: Mommabear ]

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Lymetoo
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and in the link Keebler gave you:

Why don't LLMD's take insurance??? ( some do )

The reason .. HERE:

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/2/15615?#000005

SEE "TF's" REPLY ON THE ABOVE LINK. PERFECT EXPLANATION!!!

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Keebler
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Before your spine appointment . . .

Just in case this is offered, please be sure to read this before your appointment. Also do not believe it if told that any steroid shot is just localized and will not go into your body. It will. And it can be disaster in ways unimaginable.

Remember this if ever offered surgery, for steroids are often used afterward (but you can direct against them and, hopefully, your wishes might be heeded).


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.
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Mommabear
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[ 04-01-2015, 08:19 AM: Message edited by: Mommabear ]

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lymeinhell
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There ARE two very good Lyme literate medical doctors in NJ. The one you went to see calls everything 'post lyme syndrome' and will not treat you without a 'positive' test, which is a bunch of BS. So, especially if you have coinfections, you'll be up a creek without a paddle in no time.

Out of curiosity, do you sleep on your side, and if so, which side? Also, do you have a regular spring mattress?

--------------------
Julie
_ _ ___ _ _
lymeinhell

Blessed are those who expect nothing, for they shall not be disappointed.

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Lymetoo
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That is good news that he seems to have common sense and is going to help you.

One little problem... The steroid shot he plans to give you could open up the Lyme and make it spread to a debilitating level.

It could make it VERY difficult to recover from, though I DO understand your need for pain relief. Do your homework on Lyme and steroids before you agree to the shot.

I have several bulging discs and have even had bursitis in my shoulder. I've always refused the steroids and my pain usually gets better.... EVENTUALLY. Takes a LONG time, I must admit.

Good luck in this and keep us posted.

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

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Lymetoo
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Please review this very important article. (it's not a long one)

Antibiotics and Steroids:

http://www.lymenet.de/literatur/steroids.htm


"In conclusion, the decision to use the steroids in a Lyme patient must be given considerable thought and the possible
benefits must be weighed against the risks. I would not use steroids unless the patient was also on antibiotics."

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

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Judie
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Can you explore other options first? Acupuncture? k laser? a good osteopath?

FYI, don't take fluoroquinolones (leviquin, cipro, avelox), especially with the steroids, it will make the pain 100 times worse. Take extra caution with either of these drugs.

Since steroids suppress the immune system, it can make the body go nuts with infection.

I got permanent eye damage from just the cream (I didn't even use around my eyes). This was before Lyme. I have no idea what it would do to me now.

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DeathToSpirochetes
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Mommabear,

I have three herniated disks and take Neurontin (gabapentin) for nerve pain.

When I was undiagnosed, I had some epidural steroid shots. Made me worse. Even intramuscular steroids are not good for Lyme. I know this is said somewhere in Dr. Burrascano's treatment guidelines.

Lyme treatment, acupuncture, osteopathy, and physical therapy were the most helpful for my spine. It is much better than it was several years back. Even when I was just on doxycycline, it reduced my inflammation.

I don't know much about Lyme yet but oh boy, do I know a lot about back pain!

--------------------
Female. Misdiagnosed with fibromyalgia for six years. Started treating Lyme in 2014. IgG positive for mycoplasma and clinically diagnosed with bartonella. Also have Hashimoto's thyroiditis.

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Mommabear
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[ 04-01-2015, 08:19 AM: Message edited by: Mommabear ]

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Keebler
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-
Mammabear,

Glad you will have some good images soon.

No one hear is trying to say this is definitely lyme. You seem very sure it is not.

However, you started by asking if it might be related. [ Topic: Not sure if lyme related ]

So, you have information on how that could be. And it's always good to know more about how lyme can work - either for yourself, for now or in the future . . . or for others in your life.

Of course, there are many other variables.

Still, about "move it or loose it" -- if tissue is irritated for whatever reason, often it requires rest to heal.

As your MRI scans return soon, I hope the necessary light will be shed.

Another thing to consider: gluten. Whether or not genetic celiac might be in the picture, a gluten free diet for a month or two may be a good experiment to see if inflammation might decrease.

Gluten can cause all kinds of pain and not just in the gut. Just one more path to consider.

Good luck.
-

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Mommabear
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[ 04-01-2015, 08:19 AM: Message edited by: Mommabear ]

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Keebler
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-
Yes, lyme can cause damage.

Yet, also with lyme, the persistent / chronic aspects are important to consider. Lyme can withstand the basic treatment and show itself again in various ways - especially if the cyst form was not treated.

On-going damage is also not always evident as it "goes on" either.

Antibiotics will not work on the cyst form but can cause lyme spirochetes to go into the cyst form, become dormant for any length of time.

With various stressors - or just when they "want to" the cysts can break open and spew forth numerous spirochetes into either lyme that attacks a particular area or the entire body.

There are various forms of lyme and they must all be targeted with very specific methods, a combination approach. Lyme can evade the best attempts -- so it has to be approached a variety of ways, over time - sometimes for months or years. Or in cycles.

It's important to understand how that works. Whether in this situation or not, lyme is not just either "new" or "past" -- the persistent / chronic stealth nature of it can be very real.

Hopefully, this is not the case but it could be so it's just one variable that should be considered.

And it is something that those who follow only the IDSA will not do

so it's vital to find an ILADS educated / aware doctor who knows as much as possible about all the aspects of tick borne infections for the best assessment and to address questions of this matter in a particular circumstance.

As lyme rarely travels alone, other stealth tick borne infections that were not considered with initial lyme diagnosis can be not such a big deal at the time (or be a big deal but go ignored) yet become more evident at later times.

These other tick borne infections can also affect nerve tissue, functions & fibers just as much as lyme can.
-

[ 10-30-2014, 06:52 PM: Message edited by: Keebler ]

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