Lyme Disease Community
MS, Lyme and how to find out?
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This forum is for questions and support regarding What Causes Lyme Disease, Diagnosing Lyme Disease, and Joint Pain. Topics for discussion also include Living with Lyme Disease, Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, other Tick Borne Diseases, Nervous System issues, Prevention, Risk Factors, Skin Disorders, Symptoms and Treatments

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MS, Lyme and how to find out?

A little history:

I lived in New England in Mass, Ct, and VT in hot bed of Lyme until 1977. Of course Lyme was virtually unknown then so maybe it was a secret bed. We spent our childhood playing in fields and woods with no thought of anything except avoiding yellow jacket nest and staying on our horses backs :) I was bitten by a lot of dog ticks, and took them off the dogs, gleefully dumping the flailing things into a can of gas. Had a few spells of unknown aches and pains and fatigue but it was passed off as growing pains or Oh you are too tired, go sleep. And sleep i did, for days at a time more than once.

Graduated UVM and in '77 and bolted to Texas to pursue a career in Horticulture, working outside in woods and grassy areas, enjoying deer, armadillos, possums and poisonous snakes as they roamed the park I worked in. In '88, We drove my husbands parents furniture in a u haul trailer for a 12 hour trip and I noticed I was crawling with ticks in the passenger side of the truck! All sizes. We bombed the truck that night and did a Tick Check on both of us, removing 2 or three little ones from my hairline. Shortly after that I had a funky circular rash on the back of my neck. Figured it was a spider bite, but soon after I almost keeled over on my daily run from the weirdest onset of the worst overwhelming fatigue..

Spent a week in the hospital while they ran heart and gallbladder, thyroid and a gazillion other scans, while I slept. No one ever thought of Lyme, I mean it wasn't in Texas. And I did physically bust my butt on the job. I was diagnosed with Mitral Valve Prolapse and anxiety and after a couple weeks of Xanax, regained my energy and went back to working out in the blistering Houston sun.  I started having to wear sunglasses anytime I went out in the day and the heat, previously just a nuisance, started really dropping me, causing dizziness and weakness. Also started joint, tendon and back pain.

When I got pregnant in '91, I retired from the physically too demanding field of Horticulture and went into computers, graphic arts and eventually photography. After my daughter was about a year old the anxiety attacks started. Back to Xanax, which worked its wonders.

In '98, after a vacation in Mass, VT and ME, I had that creeping kind of chronic fatigue and my feet went numb up to my knees.  Saw my family doctor and tested my thyroid yet again had xrays on my back etc nothing amiss. My younger sister, living in Mass, had been a test subject for a Lyme vaccine a few years prior and it didn't work and she ended up with Lyme, big time. While I was talking about all this fatigue etc she asked if I had been tested for Lyme, because I had all the same symptoms she had had. No, I hadn't, asked family Dr.and he gladly ran the Elisa test and it came back negative, of course. My sister said NO, get the Western Blot. That came back negative. So as a precaution my Doctor gave me a month of Doxy. After 2 weeks I was so sick I quit taking it, thinking I was allergic to it being sensitive to most drugs. I wonder.... it could have just been a herx. So he gave up and offered me an anti depressant. That made me worse after 3 day so I quit that. I just sucked it up and went on. My knees hurt and hips and shoulders and wrists bothered me alternating which was worse. I decided I was just a hypochondriac and blew it all off as aging.

A few more years passed. In 2001 I had optic neuritis. The eye doctor sent me to ophthalmologist who ran a visual field test and shuttled me right off to a neurologist. She said it was possibly MS, and 50 percent of the people went on to develop MS inside of 10 years.Things healed up by themselves within 6 months leaving my sight about 95 percent in affected eye, but I found I couldn't track a tennis ball anymore. MS? Doesn't run in my hardy family. None of us 5 kids ever got sick. No colds, no flu etc. So I politely declined to take prophylactic drugs, and went on with life just fine, except for the anxiety and increasing pain in my muscles and joints.

In '03, I got that debilitating fatigue, again, so saw a naturopath who suggest we retest for Lyme. This time we sent it off to Igenex, I think, and it came back inconclusive. Only the KD 41 band was definitely positive but since nothing else was more than weakly positive or indefinite I was deemed negative. KD41 didn't mean anything. Or did it? Over the years I have always wondered why that band was ++ Why would I have spirochete tails or pieces in my blood?

To end this long story, in 2008, I was diagnosed with Breast Cancer. When I had the biopsy, my right arm went numb starting with the little finger working inward to the thumb and then up the arm. The biopsy on the other side did the same thing, so I had two numb arms. Back to Neuro and other tests, meanwhile my feet slowly went numb up to my navel. Talk about scared. No one listened when i asked to redo the Lyme tests. I ended up with a third neuro who found a nice long lesion in my c-spine and diagnosed transverse myelitis (she offered me lexapro and shook her head as there was nothing to be done for TM.) I had to have my husband drive me around so I wouldn't get lost and take notes because the brain fog was so bad I could not think straight or remember a thing. The nerve pain in my hands and feet was excruciating and I started Lyrica which helped but addled my brain even more so I stopped and tried gabapentin which I have depended on ever since. Worked like a charm with no side effects.

In Jan 09, I saw fourth Neuro after my dbl mastectomy (no chemo no radiation as I refused. She sent me for lumbar puncture. I asked to check for lyme in the CFS. I had oligiconal bands for MS, got a diagnoses, but no to the Lyme but by they way they answered, I am not sure they really tested.Cannot find the results anywhere. She slammed me with a 5 day dose of steroids and I was never so ill in my life. I was supposed to feel better!! And I just felt worse long afterwards. Lost all my strength and lost 30 lbs and back to chronic fatigue. I could barely get around and couldn't stay on my feet for more than 10 minutes at a time or I would pass out. Blood pressure never got over 98/65 or pulse over 60 or temp over 97. Very Scarey. I did test for and diagnose a thyroid problem the Doctor's couldn't (or wouldn't) find and have since turned that around, and gained back to a healthier weight, and brought my pressures and pulse and temp up to normal. My family and friends were on the verge of saying last rights before that.

I had allergic reaction to copaxone and since I'd had bad reactions to all the drugs she'd tried on me, and since I'd had cancer, she skipped the interferon based stuff and put me on IVIG. I have done fine on it getting a new immune system every month. Not getting any better but no relapses since 09 when I started. But my joint pain and overall pain continues unabated although recent MRIs show the Cspine lesion almost gone and no new enhancing lesions in the brain.

My sister recently got Lyme again and is going a more natural route with a Doctor in NYC and one in Maryland. She had Parvo, Barts or Babs, I forget which, and of course Lyme itself. After 6 months of treatment she is pushing me hard to go see her Doctors as she says she feels better now at 50 than she has since she was in her 20's. With all the critters gone, she is hale and hearty again and off to ski in Switzerland. She also said while she was getting infusions,she met several ladies there who'd had MS for years that had been mis-diagnosed and really had Lyme and some co-infections.

My question is: what tests should I have run and by what lab or labs and is there anything I can do to chase these bugs out into the open?  I am fairly sure I have more than MS, if I even have MS at all.

Cheers, Jessica
Tags: ms, lyme, Pain, Anxiety, testing, Co infections, Alternative Treatments
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Part two:

(One notable exception:  ophthalmologists!  As a group, they are very up to date on Lyme, and when you mentioned your eye difficulty, it made me think to mention this.  A Texas ophthalmologist may or may not feel free to be upfront with you about Lyme, but sometimes there is an underground of docs who really do take Lyme seriously but they just don't publicize it, otherwise the TX medical board will revoke their medical licenses.  I doubt however that an ophth would be willing to undertake full care for Lyme treatment, but would expect you to see a whole-body kind of doc.)

Lyme however doesn't play by the usual rules.  Lyme bacteria have the trick of hiding in areas of low blood flow, such as cartilage, where the immune system does not detect and kill.  Also Lyme can form slimy shields called 'biofilms' in the body, where they also hide and do their dirty work.  Piercing the biofilms requires a separate antibotic (antibiotic) such as Flagyl, along with a regular antibiotic to then kill the exposed bacteria.

You mentioned thyroid:  Lyme can also affect thyroid function -- and I was also on thyroid supplements for a brief time, then when I kicked Lyme, didn't need the thyroid meds anymore.

You also mentioned having a positive KD41 band on an IGeneX test.  IGeneX does several different tests, depending on what the doc orders, and it may be that this was the basic Western blot test that any doc will use in considering Lyme.  (Other labs also offer W.blot.)  W.blot looks for your immune system's reaction to an infection, and after a while, your immune system (which is set up to attack bacteria with very short life cycles) will simply give up and assume that it's killed all the bacteria in question ...
so your immune system is no longer producing the antibodies against Lyme that the Western blot test would measure, and so the W.blot results are zero -- even if you are still infected with Lyme.

(My Lyme doc ran the W blot just for the extra data points and was startled to see how strong the reaction was ... he said my immune system was clearly strong, because as long as I had been sick, he would have thought my immune would have closed up shop and stopped making antibodies.  Everybody is different.)

IGeneX also offers a completely different test often used by LLMDs, which looks not for the *indirect* evidence of your immune system's transient reaction to Lyme bacteria (as a Western blot test does), but looks instead for *direct* evidence of the Lyme's  -->>DNA<<--  in your blood.  So depending on which test your doc ordered, it may have completely missed the boat.  NonLLMDs do not often order the looking-for-DNA test.

Lumbar puncture is, so I read, pretty useless in diagnosing Lyme.  Lyme just doesn't tend to show up in spinal fluid in any signficant quantity.

Some people have more joint pain with Lyme, while others have more cognitive/neurological/brain symptoms, some have both -- I don't know if it's different strains of Lyme, or a difference in our immune systems, or both.  There's so much not yet known about Lyme that you just have to give it your best effort and be ready to make course corrections along the way.

MRIs are not particularly useful in diagnosing Lyme.  They will show fuzzy spots, but those can be Lyme or something else like MS.  An LLMD is more likely to use a SPECT scan, because it shows areas of low blood flow in the brain, which Lyme can cause but MS won't, to my understanding.  My doc ran a SPECT scan early on and was pretty impressed with the mess in my head.  Just more data points.

You close with:  "what tests should I have run and by what lab or labs and is there anything I can do to chase these bugs out into the open?  I am fairly sure I have more than MS, if I even have MS at all."

I'd find an LLMD for a work up.  Take copies of any test results you have, just in case it's useful to the new doc.  A nonLLMD will not be likely to run a SPECT scan or send blood work to IGeneX for other than a W.blot test (skipping the LymeDNA test) or interpret any of the test results the way an LLMD would.  Point of view is everything in Lyme.

It is better to have your LLMD close at hand, because s/he will want to see you at least ~every month or two while you are in treatment, and if something isn't working, you don't want to be far far away with no way to see the doc.  (That said, I know that my own LLMD has patients who fly in from far away places, just because he's fearless in the face of Lyme, and very knowledgeable -- and California, bless its heart, has freedom of conscience for MDs to practice as they see fit.)

So you *can* do long-distance med treatment, and since your sister has a good doc, you could perhaps stay with her for the initial workup period and return visits.  It all depends on what the doc is comfy doing, and what you are comfy doing -- and for all the hassle and expense of travel, it might be far better than being in Texas given the restrictions on LLMDs there.  Do check with the TXLDA and see what they have going in the way of resources.

Hope that's helpful -- let us know how you do, what you do, and if you have any questions for us.  Go for it!  There IS life after Lyme, and we're here to prove it. -- J.
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Hi, I am sorry to hear of your problems. I am unable to write a lengthy response due to my illness so others will,  but I wanted to give you some answers.

I was misdiagnosed with MS among other things but it was Lyme. I know of a woman who spent 20 years in a wheelchair with "MS" but it was really Lyme. I got to a point where I couldn't walk either. Better when I started abx.

I would suggest finding an LLMD who can test you for Lyme and co-infections. Go to ILADS dot org and email them asking for a LLMD (Lyme literate Dr) near where you live. If you are still in MA, I was born in Western Ma and know of an LLMD in that area that a friend went to.

IgeneX is the lab to use, some people do that themselves, you can go to their website. Since it is such a complicated illness, I would suggest going to an LLMD for treatment. I am on a combination of Chinese herbs and antibiotics.

If you have other questions, we are here for you.

Hang in there.
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Welcome! -- tho sorry you have reason to be here.  :)

You give good history ... this will be very useful to a future MD.  And I would most definitely find a Lyme specialist for a work up, given your history and symptoms.

The first and biggest issue you may have is finding a Lyme specialist in Texas.  The TX medical board has decreed that there is no Lyme in Texas, or if there is, it's inconsequential, with the result that it is, to my understanding, very difficult to find the kind of robust care you can get elsewhere.

But before you go travelling to find it, search around online and see what you can locate that can guide you to Lyme docs in your area.  There is a TX Lyme disease assn, just google TXLDA and the link will come up.  I don't know anyone who has used them to find a Lyme doc, but it's where I would start.

We do NOT post the names of Lyme docs here in the open, simply because there are states like TX where Lyme docs run the risk of their licenses being revoked for allegedly overtreating with antibiotics.  Some states, like California, have 'freedom of conscience' laws, which protect an MD from medical boards trying to boss the docs around.  That doesn't mean the doc gets a free pass, it just means that there is no huge threat of the doc losing his/her license to practice -- tho we also don't use the docs' full names here either, just abbreviations like 'Dr M'.

Sadly, to my understanding, TX is not a 'freedom of conscience' state, hence all the skulking around.  Which is why I would start with TXLDA and see what ability they have to refer you discretely.

LLMD is not a title or degree, but instead is patient slang for a 'Lyme-literate MD', meaning a doc who thinks bigger thoughts about Lyme and the mystery that it still is in many respects.  Lyme is caused by a spirochete, a spiral-shaped bacterium, in the same family as syphilis, and if you've read of the devastation that untreated syphilis can cause, you'll know why getting treated for Lyme is a really good idea.  Lyme does not affect everyone the same way, so not everyone gets the brain involvement, but instead some get hit in the joints and muscles.  Some of us get a bit of each, and that is part of the confusion in the medical community:  the wide variety of symptoms.

Another complicating factor is that half the time, the Lyme ticks also carry other unrelated infections that need separate testing and treatment from Lyme, and nonLLMDs just don't get that, for some reason.  Babesia, bartonella, ehrlichia, and a few others are names you might see.

Also, nonLLMDs firmly believe that a few weeks of basic antibiotics like doxycycline or amoxicillin will cure even the most entrenched Lyme infection ... If caught VERY quickly, like when the tick is still attached to you, a short course of abx may work, but many many of us (including me) never saw the tick or had the famous circular red rash that nonLLMDs always want to see, and it sounds like you've been a ticks' picnic for a loooong time.

Steroids are absolutely the wrong thing to give someone with Lyme.  I'm not medically trained, but even ignorant I know that you don't give someone with a serious bacterial infection (like Lyme) a medication that will suppress immune system activity, which is what steroids do.  That is also why a misdiagnosis of MS when you really have Lyme is so dangerous, because MS is thought to be autoimmune, and the treatment is to suppress the immune system.  Bad, bad, and bad when it's really Lyme.

Neurologists, infectious disease (ID) specialists, and rheumatologists are specialty types of MDs who are particularly blind when it comes to Lyme.  If they will even diagnose Lyme, they will usually at most treat with a couple weeks of simple antibiotics, and then tell you that you have 'post-Lyme syndrome', meaning your immune system is over-reacting to a now-dead infection, and just to deal with it -- too bad, too sad.

[continued in next message pane]

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Part two:

(One notable exception:  ophthalmologists!  As a group, they are very up to date on Lyme, and when you mentioned your eye difficulty, it made me think to mention this.  A Texas ophthalmologist may or may not feel free to be upfront with you about Lyme, but sometimes there is an underground of docs who really do take Lyme seriously but they just don't publicize it, otherwise the TX medical board will revoke their medical licenses.  I doubt however that an ophth would be willing to undertake full care for Lyme treatment, but would expect you to see a whole-body kind of doc.)

Lyme however doesn't play by the usual rules.  Lyme bacteria have the trick of hiding in areas of low blood flow, such as cartilage, where the immune system does not detect and kill.  Also Lyme can form slimy shields called 'biofilms' in the body, where they also hide and do their dirty work.  Piercing the biofilms requires a separate antibotic (antibiotic) such as Flagyl, along with a regular antibiotic to then kill the exposed bacteria.

You mentioned thyroid:  Lyme can also affect thyroid function -- and I was also on thyroid supplements for a brief time, then when I kicked Lyme, didn't need the thyroid meds anymore.

You also mentioned having a positive KD41 band on an IGeneX test.  IGeneX does several different tests, depending on what the doc orders, and it may be that this was the basic Western blot test that any doc will use in considering Lyme.  (Other labs also offer W.blot.)  W.blot looks for your immune system's reaction to an infection, and after a while, your immune system (which is set up to attack bacteria with very short life cycles) will simply give up and assume that it's killed all the bacteria in question ...
so your immune system is no longer producing the antibodies against Lyme that the Western blot test would measure, and so the W.blot results are zero -- even if you are still infected with Lyme.

(My Lyme doc ran the W blot just for the extra data points and was startled to see how strong the reaction was ... he said my immune system was clearly strong, because as long as I had been sick, he would have thought my immune would have closed up shop and stopped making antibodies.  Everybody is different.)

IGeneX also offers a completely different test often used by LLMDs, which looks not for the *indirect* evidence of your immune system's transient reaction to Lyme bacteria (as a Western blot test does), but looks instead for *direct* evidence of the Lyme's  -->>DNA<<--  in your blood.  So depending on which test your doc ordered, it may have completely missed the boat.  NonLLMDs do not often order the looking-for-DNA test.

Lumbar puncture is, so I read, pretty useless in diagnosing Lyme.  Lyme just doesn't tend to show up in spinal fluid in any signficant quantity.

Some people have more joint pain with Lyme, while others have more cognitive/neurological/brain symptoms, some have both -- I don't know if it's different strains of Lyme, or a difference in our immune systems, or both.  There's so much not yet known about Lyme that you just have to give it your best effort and be ready to make course corrections along the way.

MRIs are not particularly useful in diagnosing Lyme.  They will show fuzzy spots, but those can be Lyme or something else like MS.  An LLMD is more likely to use a SPECT scan, because it shows areas of low blood flow in the brain, which Lyme can cause but MS won't, to my understanding.  My doc ran a SPECT scan early on and was pretty impressed with the mess in my head.  Just more data points.

You close with:  "what tests should I have run and by what lab or labs and is there anything I can do to chase these bugs out into the open?  I am fairly sure I have more than MS, if I even have MS at all."

I'd find an LLMD for a work up.  Take copies of any test results you have, just in case it's useful to the new doc.  A nonLLMD will not be likely to run a SPECT scan or send blood work to IGeneX for other than a W.blot test (skipping the LymeDNA test) or interpret any of the test results the way an LLMD would.  Point of view is everything in Lyme.

It is better to have your LLMD close at hand, because s/he will want to see you at least ~every month or two while you are in treatment, and if something isn't working, you don't want to be far far away with no way to see the doc.  (That said, I know that my own LLMD has patients who fly in from far away places, just because he's fearless in the face of Lyme, and very knowledgeable -- and California, bless its heart, has freedom of conscience for MDs to practice as they see fit.)

So you *can* do long-distance med treatment, and since your sister has a good doc, you could perhaps stay with her for the initial workup period and return visits.  It all depends on what the doc is comfy doing, and what you are comfy doing -- and for all the hassle and expense of travel, it might be far better than being in Texas given the restrictions on LLMDs there.  Do check with the TXLDA and see what they have going in the way of resources.

Hope that's helpful -- let us know how you do, what you do, and if you have any questions for us.  Go for it!  There IS life after Lyme, and we're here to prove it. -- J.
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PS ... on the ILADS [dot] org website, you will find Burrascano's treatment guidelines -- they are a bit overwhelming and have grown like Topsy over the years, but if you're up for it, give a browse.  Just know that it's there if you're up for reading.  Your email indicates you are pretty clear headed despite Lyme, and many of us were not when at your stage (me included), so only do what helps you ... don't feel compelled to read it all, or read it AT all.

Burrasacano is one of the great LLMDs (and one who got his medical license pulled for treating Lyme in a way the old stooge docs didn't "believe" in.)

Welcome to the wild wild west of cutting-edge medicine.
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I did not see your are in Texas, OMG, I was there when I found out I had Lyme but was misdiagnosed with MS and a zillion other things.

I tried ILADS and the association and got no place. Unless it has changed, you should try MD Junction, lyme by state. They know where in Tx to go.

There may be one LLMD in TX. When I was there 2.5 years ago, there was a doctor who had Lyme himself on the forum. He really saved my life by telling me not to take the various meds they wanted to give me for autoimmune illnesses. He called me and was fantastic.

Good luck.
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Jackie, Your in depth information is so kind and educational, it brought me to tears. Thank you, Thank you, Thank you.

I particularly love the "you've been a ticks' picnic for a loooong time". And that is a perfect way to put it. :) I got a good laugh out of that.

Mojogal: Thanks for your input too. I would go on but can barely type today. Looks like its going to be a couch day. Brain fog to the max. Hard to put words down. I did pretty well with my history, I was proud to be lucid for an hour while I poured it out, tried to reorganize into a sensible timeline etc.

To All: I will go check out ILADSdot org etc and see what turns up. I have to say I watched Under my skin last night while I lay in pain and could not get comfy in my bed or sleep. My sister sent me a copy on a dvd. I finally opened it. The blonde girl could be me, except I am a bit stronger, hardier maybe, and not quite as disabled all the time. Most of the time.

I don't really mind traveling to NYC and/or Maryland to visit my sisters docs. She is more of a tick picnic than I could ever be, having had the disease 3 times that she knows of and still living and riding horses in Mass.

She said she would meet me at the airport and take me to the docs and has friends to stay with both places. :) Doing long distance would be OK especially for the Maryland doc, since I have a great naturopath who would be bold enough to over see my protocol. But I dont feel starting with him would have any positive outcome. I m sure y'all have found once a doctor decides what he thinks your problem is, it gets set in his mind and he rarely thinks outside that diagnosis. Even a terrific naturopath like the one I've been to in the past is the same way.

I am off to rest then delve into iladsdotorg site and Burrascano's protocols.

I will head north, I think, in the spring to see my sister's docs. Don't want to go in winter since my gait is so unsteady I would fear slipping and breaking my head open. Its already got a lot of holes and doesn't need more. ;)

Thanks for all your kind input. I feel better knowing there is a way out.

May y'all get your lives back completely and be happy.
Cheers,
JJ
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I forgot to mention... I will get back with y'all when I get somewhere, and if it involves Drs names will see about finding another secure/private way to share what I learn. I totally understand not using Dr's names to protect them. Especially here in Texas!!!!!

Thanks again.
JJ
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Depending upon where in MD, I am moving back to Northern Va for a year and know of a Dr in Fairfax, Va. Some parts of MD are not too far from Va. You can send me a private message if interested.

You can also write the National Capital Lyme association for a doctor near where you will be in MD.

I totally understand the Lyme brain fog, I wish I could write like Jackie. :)

Take care
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Whew!  Glad my long ramble didn't scare you off.  :)  Even I was surprised how long it was when I got done and it wouldn't post until I broke into two parts.

A few further comments, if I may:

-- I'd contact the LLMD you intend to see asap and book an appointment for the time period you are comfortable with.  Good LLMDs have very long waiting lists for new patients, tho your sister's relationship with the LLMD should help you get in.  Still, the sooner you book, the better.  The initial appointment can be lengthy, and so the time slots are harder to come by in the doc's schedule.  Here it is midFeb already, so spring will be here before you know it.

-- If you want comments on a particular LLMD, you could post a general message here on the website saying "I've found an LLMD in [City/State] and would like to see if any of you have experience with that doc.  If you would reply to this message that you have seen *any* LLMD in that [City/State], please let me know, and I will send you a private message through this MedHelp system with the LLMD's name, so that you can, if you have experience with that doc, give me your impressions before I make an appointment."

LLMDs are a wildly diverse bunch, so you are wise to gather data ahead of time since you have to travel so far.  If you can't figure out the private message function here on MedHelp, let us know ... it took me a while to work it out.

-- About working with the naturopath and an LLMD at the same time -- the trick will be not having each of them prescribe or suggest things (meds, vitamins, etc) that conflict or may conflict with each other.  My LLMD was totally uninterested in vitamins and supplements, and I don't remember now if I was even asked what else I might be taking.  You yourself may need to coordinate all that, to ensure you are not taking things that conflict and thus impede your treatment and progress.  

-- About the movie 'Under Our Skin' -- very glad it didn't dismay you.  I tend not to recommend the film to anyone new to Lyme, because it does give a rather dismal view of the whole situation, tho I understand it has a newer section at the end that is more positive in its outlook than the earlier version I saw some time ago.

We're all here around the campfire on a pretty regular basis, so keep us posted!  Sounds like you're organizing things very well.  Best wishes -- J.
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this is almost more than I can digest this weekend. LOL
I had to give a best answer so I choose Jackie's part 2, but everyone has given most helpful answers so I didn't want anyone to feel slighted.

I am researching on MDJunction but they want questions answered first and that takes a clear head and information on hand. Actully going thru old records I have had a western blot, back in 99  and only 39 was present. It wasn't in a format that i recognize so I have had another one, but I couldn't find it anywhere. now I recall i got the results via email and it might have been on my back up network drive that crashed. so am still searching. on that one I do recall only the kd -41 band was positive, and they explained that meant nothing. I have to find that I guess before I can ask for a LLMD on MD junction.

I will certainly as the question, Jackie, as you spelled it out, when I find a few docs to interview. Thank you. I do know the PM system pretty well so can find that. PMs are also directed to my email address so I won't miss one.

Hopefully I can share a bunch of good information with everyone as I go through this process. Although Lyme is a Bit*ch, it is more curable, or treatable with better outcomes than MS. If y'all disagree with that, please comment.

Love Y'all. Be well
JJ
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Well, it's definitely a *group* answer, because we each have different experiences and co-infections and interests, and each contribute from different angles.  So on behalf of all of us, thank you for your kind words!

Glad you weren't overwhelmed by it all, and please let us know how you do and what you do -- you're a contributor too.  Best wishes! --

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Once you do get on to MDjunction in TX, you will find them to be very helpful as well!
Take your time. Be well.
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Hello. I am getting caught up on the forum and saw your posts. You really do sound like a long term case of Lyme Disease. You could even have gotten a mild version as a kid, and then a worse version in Texas.  Mouse studies have shown that a mouse carrying two different genetic variations of Lyme  are sicker than those with just one.

I am glad you're pursuing treatment.  I want to encourage it, especially since you got so much sicker on steroids.  I did, too.  I had MS-like symptoms, but not enough to qualify me for a diagnosis. Doctors couldn't deny there was something wrong with me, but they couldn't diagnose me either. Whatever mysterious ailment I had, they were sure it wasn't Lyme, thanks to my negative blood test and CSF test.  

I just thought I'd mention that band 39 is very indicative of Lyme Disease.  Retesting may or may not be helpful.  Sounds like you qualify for a clinical diagnosis with your extensive history.  And don't be afraid to go for antibiotics.  Natural treatments can certainly improve one's health and get the infection to a manageable point. But I haven't heard of any cures with it.  GIven the length of your illness, you might find that a combination of both will serve you well.  

I used to be pro-pharmaceuticals and highly suspicious of "natural" treatments.  Let's just say I've been schooled!  I am very impressed with how some of my natural/homeopathic treatments have worked.  I had Lyme, Bart, & Babs for six years before my diagnosis and was severelly ill when finally diagnosed, only because I went to an LLMD, not because any of my dozen doctors thought I had it.  I am 15 months into treatment and dealing almost entirely with my Babesia now.

Be sure an LLMD or LLND checks you out for coinfections!

Also, I encourage you to get your daughter tested, or even better, to also go see an LLMD.  Lyme is sometimes passed from mother to child in utero.
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Thanks for your input, Ricobord. I'd say more but am too weak today.
When I have a better day I'll come back and try to digest it all. JJ
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I can imagine this is a lot to absorb.  I remember being blown away when I realized I'd gotten Lyme six years before my diagnosis, and you are clearly dealing with a much longer period of time.

I remember Jackie saying something to me about how past memories would occasionally pop up and make sense now, even if they didn't back then.  For example, I was amazed to realize that my wild hormone swings and hemorraghic ovarian cysts were probably side effects of my Lyme infection.  I am sure my gyno never would have consider Lyme.  My gp theorized that my hormone problems were likely a result of my past IVF treatments.  I am sure she never considered Lyme either.

Many of these memories became bittersweet as I realized how so many seemingly disparate medical issues were all connected to undiagnosed Lyme Disease.  The silver lining was the hope that these issues would not return once I was properly treated.  So far, so good.  (Although I am of the impression that my brain lesions will not heal.  I may not get back to the same level of verbal ability and short term memory that I had before.  Ah, well.  My friends and family understand me well enough and I've learned to make lists and use reminders on my phone.)

I have not heard of any links between Lyme and breast cancer, so I would guess those are two different issues.  Breast cancer is frighteningly common and I know multiple people who have or have had it, two who got it in their early 40's.  Then there's my cousin who got it at 18.  I hope you are cancer free now!

I can testify to the value of integrative treatment for Lyme.  Between my various antibiotics, other prescriptions for secondary issues, and supplements, I am feeling so much better now.  I must admit, the recovery process has been slower than I expected, but now I realize that was in part due to an underlying Babesia coinfection.  I can only identify a couple Lyme symptoms left (out of 80 something in total).  The rest of what I'm dealing with now is Babesia, which is turning out to be fairly nasty for me.  I am very hopeful that I'll feel a whole lot better in a couple more months.

You are welcome here for support and encouragement!

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Well said, Rico.  Gotta say, tho, don't give up on the memory thing.  There is stuff I don't remember from when I was actively ill, but my memory is working really well these days (knock wood!), and I've only recently realized I wasn't getting enough calcium in my diet.  

So now I'm swilling 2 measured cups of nonfat (and for me, lactose-free) milk every day, and wow is my brain happier!  I am even remembering things I know I was told when I was very ill but didn't remember until *now.*  The memories were being made, but were not accessible till now.  Strange, huh.  See how it goes after your treatment is all done ... you may have been stashing away memories you just can't locate at the moment.  Till then, take lots of photos!  :)
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Encouraging words!  Thanks!
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Really interesting stuff, y'all. Jackie, I can't drink milk either and try to get my calcium from "greens." Lots of cole greens like kale, cabbage, bok choi, collards, broccoli. It was tough getting like Mustard, ugh, but when cooked with a bit of onion and bacon fat, salt and pepper, I got a taste for it.

As I have "MS." maybe. I follow a paleo type diet, more or less what Dr Terry Wahls recommends from her book "Minding My Mitochondria" which I got at Amazon. I eat gluten free, grain free, dairy free (mostly - I use organic butter) and stick to lots of veggies, low glycemic fruits, and organic meats. All this great stuff should have helped a lot over the years I've been doing it, but it hasn't. I keep up with it since its a good eating regimen.

Milk is so polluted now with antibiotics, pasteurization and so forth, I kind of consider it a dead food. My stomach agrees with me too. LOL But that's just me. We are all different, yes? :)

Calcium supplements are awful. And calcium is inflammatory, something I try hard to avoid. I take magnesium glycinate to go with my "greens" because it is needed with calcium and mag gly is not one that causes the trots. ;) Also I take CoQ10, EPA-DHA and Vit D.

Has anyone found Vit D makes them feel worse? It does me, but I try to keep my levels at optimum level since it cannot hurt in the long run.

Sorry bad weekend, I am rambling... Y'all enjoy the rest of Sunday. I am loving this forum. I feel like I am home. :) If I can just take the plunge and find a Doctor who is LL. Maybe tomorrow. JJ
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Are you sure it really is MS and not Lyme in disguise? Many people, including myself, were misdiagnosed with MS.

Rico, I am going to keep the hope that my memory will come back one day. You too!
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Thanks for the data -- with a few variations, you and I seem to have similar dietary approaches.

I gave up gluten, and am the better for it.  I do eat rice, however, and it's no problem  since it has no gluten ... and I also eat quinoa (KEEN-wah), a tiny seed that is similar to a grain that I had never heard of till recently.  It tastes a bit like pasta, but is not grain- or wheat-related at all, and it has ALL the essential amino acids in one go, and without gluten.  I buy it in the bulk foods aisle at Whole Foods, but have also seen it elsewhere in small, rather expensive boxes.  (1/3 of a cup dry makes a good-sized bowl full when cooked with water and a little olive oil.  Add separately cooked veg and it's great!)  My skin texture improved when I began eating it too, telling me I had been missing something amino-acid-related in my diet.  And it's good!  Descriptions are of a 'nutty' flavor, but I'm not much on nuts, so can't say.  I just like it.  It would be good with your assortment of cooked greens and onions mmmm.

I have recently upped my Vit D levels, but have had no bad effects as you mention.  I was also advised by a wise friend to add Vit K-2 with the Vit D, because K-2 'guides' the calcium into bones and teeth instead of letting it build up in arteries and muscles -- I had gotten muscles pains after starting the Vit D supplements w/o the Vit K-2.  There is information online generally about the synergistic effects if you are interested.  Seems to work well for me so far.

Personally, I HATE milk ... always have.  I don't digest it well.  I suspect it has to do with me lacking the enzyme that breaks down the lactose; now that I'm drinking fancy-dancy lactose-free, organic, fat-free, vitamin A and E and calcium-enriched milk (with a spoonful of unsweetened chocolate powder in it, since I loathe the taste of milk), I'm doing much better.  :)  It doesn't cost much more than regular milk, and I'm with you about all the hormones and garbage the milk cows are stuffed with these days.  I get the milk at a big chain grocery store, about $4 a half gallon for the fancy-dancy type.  Two measuring cups a day of the milk gives me 100% calcium MDR.

I've recently also upped my magnesium intake ... I've been reading that the ratio of calcium to magnesium is out of whack in the usual US approach ... it should be more of a 1:1 ratio in the diet, where calcium here is often twice or more than the magnesium.  I don't know any more about it than that, but I'm recently taking 1000 mg/day of each of magnesium and calcium, to good effect so far.  We'll see.

Plus I take other supplements:  evening primrose oil, Vit C, Vit B, Vit E, glutathione, grapefruit seed extract, oil of oregano, astragalus, olive leaf, selenium, and biotin.  Whew.  And a multivitamin just in case.  Some of these are hang overs from my Lyme days, but I've kept on taking them.

If you want to go off dairy (incl. butter) entirely, you might try extra virgin olive oil -- it's all I cook with.  After a short while, the 'olive' taste disappears into the background, and it's very healthy.  I'm told that 'extra virgin' means it's from the first cold pressing of the olives, with no chemicals used to extract the oil, so it's very pure.  

So, for what it's worth!  Take care -- keep us posted.  Let me know if you see anything odd about my vitamin list above ... always glad to get comments!
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