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» LymeNet Flash » Questions and Discussion » Medical Questions » What to do next? Untreated and dr is useless

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Author Topic: What to do next? Untreated and dr is useless
iraya
Junior Member
Member # 41379

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Hi Everyone - I forgot I registered here awhile ago.

My fiance is 30 now, and been dealing with this since he was 19 and he dug "something" out of his leg. Grew up on a farm in rural Virginia. He has had a deteriorating quality of life, severe pain, and now he has morphea which his dermatologist said is attributed to Lyme in Europe but not here. (WHAT??)

We live in Western Pa and he has an appointment with a LLMD in May. He has tested positive for:

Lyme Disease 23 kD IgG Reactive
Lyme Disease 41 kD IgG Reactive
Lyme Disease AB IGM, (Negative)

He was just tested last week
Lyme IGG/IGM Titer w/Reflex <0.91
Lyme Disease Screen with Reflex
Index Value Results Interpretation
----------- ------- --------------
< OR = 0.90 Negative No Lyme antibodies detected

0.91 - 1.09 Equivocal Presence or absence of Lyme
antibodies cannot be discerned

> OR = 1.10 Positive Lyme

I am going to see if I can get the true results of the other lyme tests that came back and arent showing up on his medical report online they all just say <Final> with no values.

His symptoms range from unable to concentrate, severe pain all over his body, migrating joint pain, this morphea rash that is taking over his entire body, his spine is degenerating.

He has a new PCP since this summer and according to this dr even chronic lyme doesnt exist and regular lyme even after this many years is cured with one month of doxy ( he has done this several times).

Said same doctor is sending him to an infectious disease doctor even with "CDC" negative testing. I'm hoping the Lyme dr will treat him with only 2 positive bands. He is through UPMC in Pittsburgh.

His previous PCP that he left accused him of being a drug seeker because of the severe pain hes in and the morphea rash (undiagnosed at the time) was due to the medication he was on and we promptly left his office.

I just want him to have a quality of life that he has been robbed of and misdiagnosed for so long. He is afraid since it has been going on for so long that he is never going to feel good again and all these drs want to do is throw anti depressants at him.

Side note - dermatologist wants to put him on methotrexate for the morphea which I've been reading up on and is absolutely the last thing he needs to take if he does truly have Lyme.

He needs the igenex testing but that is out of our price range due to only me working at this time. I am seriously considering getting married now instead of later and putting him on my health insurance instead of Pa state insurance so he can be seen and treated with respect. I have a feeling that is also looked down upon by doctors.

Any words of wisdom? He is ready to give up any hope he has left.

Edit - he also just became (tested) a type 1 diabetic out of nowhere not sure if this is related at all and he has NO risk factors of diabetes - hes tall and thin, but sedentary since he feels so bad all the time

(breaking up the post for easier reading for many here)

[ 01-19-2017, 02:50 AM: Message edited by: Robin123 ]

Posts: 2 | From Greensburg, Pa | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
hopingandpraying
Frequent Contributor (5K+ posts)
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Welcome back to Lymenet! PM sent for PA.

Lyme Disease is a clinical diagnosis made by a Lyme-literate doctor (LLMD) based on medical history, symptoms, test results, etc.

Band 23 is Lyme-specific and your boyfriend was under-treated. Unfortunately, he has experienced what many here have gone through.

Correct me if I'm wrong, but is the ID doc the PCP doctor is sending your boyfriend to supposed to be a LLMD? If so, he should run the other way from the PCP as well as the ID doc who claims to be a LLMD!

Stay away from Infectious Disease Doctors (IDSA). They believe one dose of antibiotics is enough and don't believe in chronic Lyme. Patients end up getting sicker.

Here is a link for you to read about "Two Standards of Care":

http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-two-standards-of-care-revisited.html

Getting personal referrals is the best way to find a LLMD. Contact the PA Lyme Support Groups I have listed below.

Hospitals are not good places to be treated for Lyme - I would steer clear of them! Many Lyme patients on Lymenet have horror stories to share about their experiences.

Here are some comments:

"I don't know of ANY hospitals that know ANYTHING about Lyme."

"I don't know of ANY hospitals or high profile clinics or any infectious disease doctors who understand Lyme and will treat it effectively."

"There are no Lyme doctors at major hospitals. They will not diagnose you there. And even if by some miracle they DID, they would not treat you past 2-4 wks."

"Lyme will get you run out of hospitals faster than you can believe."

"Most hospitals do not recognize chronic Lyme and do not know how to treat it."

Your boyfriend needs to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!

A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.

Here is a link for them:

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

Unfortunately, LLMDs are far and few between. He needs to go where they are.

Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=025539;p=0

When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.

Check the online state Lyme groups at:
https://groups.yahoo.com/neo/groups/PennsylvaniaLyme/info

Maybe they can help. They would know better about PA.

Some more resources for you (including Support Groups info):
www.lymepa.org

http://whatislyme.com/websites-and-support-groups-by-state/

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

Here is a link found on Lymenet for "Financial Help and Other Information":

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=023463;p=0

The Lyme Disease United Coalition has good information for financial resources on their website:

http://www.lduc.org/lyme-disease-resources

Scroll down for financial help, etc., available from several sources.

The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program to provide assistance for initial Lyme-related lab tests to patients who demonstrate true financial need. I think coverage is up to 75%.
View on www.lymetap.com

"Help For You" link here...

https://sites.google.com/site/marylandlyme/help-for-you

The top LLMD, Dr. H, has written a book entitled, "Why Can't I Get Better?". It is an excellent source of information.

Read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.

View "Under Our Skin" for free on http://www.veoh.com/m/watch.php?v=v21055812yWtmpgB8

Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.

To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.

Posts: 8758 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Robin123
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One simple idea I can think of while waiting to get to the doctor would be to try turmeric for the pain - it reduces my joint and muscle pain - it's so simple - can't OD on it -

I get it in bulk at the healthfood store and dip 00-size empty capsules into it. I take a couple a day.

We're all different so the trick is to find out what we respond to.

Treatment occurs in 3 areas - treat/deter the organisms, detox, and fortify the body. Lots of discussion on all of this.

Plus you can also use the Search function at the top of the page to type in a word or phrase and archived threads will come up that you can read through. Again, remember we're all different in our responses.

Posts: 13013 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
tulips
LymeNet Contributor
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Here's one tthing you could do while you do the research to find a good LLMD.

You can buy the book "Healing Lyme" 2015 edition by Stephen Buhner and your fiancé can start treating himself using herbal remedies. You can buy him an Amazon Prime membership for

$99/year which gives Free Shipping and if he treats himself, he'll really need free shipping. If I didn't have it, I'd probably spend $1000 a year in shipping costs.

Stephen Buhner is a world famous herbalist and a genius. I'm treating myself for Lyme using his books.

Posts: 653 | From Northern Virginia | Registered: Oct 2014  |  IP: Logged | Report this post to a Moderator
tulips
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I'm back again. I always remember one more thing I should have told you. A few years ago, I got myself up off my sick

bed by taking one Cat's Claw capsule a day for a couple of weeks Till I was strong enough to go to my closet and get out my box of Lyme herbs and

start the Buhner Protocol again. If, while you're trying to find a good doc for your fiancé, you want to help him, you could go to a health food store and buy him a bottle

of Cat's Claw and tell him to take one or two in the morning and at night. Any brand is good. It will make him better than he is right now.

I've found it to be an herb that's easy to take. It's from the Peruvian Rainforest and the principal herb in the Buhner Protocol for Lyme. But everyone is different so always take it

easy with herbs at first. Start with a small dose and make sure it's good for you and then work up to the recommended dose. It's a good start and it should help

him while he waits to get with a LLMD which is hard to find. Or you can order a bottle from Amazon. I like NOW brand. 500 mg. Avoid the 1000 mg. They're big

horse pills and the only way you can take one is to melt it in water and mix it with yogurt. Another good tip is -

take each herb with a tsp of yogurt - Dannon Triple Zero, vanilla flavored, is best because it has no extra added sugar, but the flavoring makes it taste good.

And it'll give him some probiotics And protect his stomach lining.

[ 01-21-2017, 08:54 PM: Message edited by: tulips ]

Posts: 653 | From Northern Virginia | Registered: Oct 2014  |  IP: Logged | Report this post to a Moderator
bluelyme
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What tulips and cat said is good ..band 41 means flagella and no good bugs have tails ..could be bartonella too but the other bands mean its likely ...it is sexually transmitted so be careful

consider bee venom therapy its 10c a bee and takes 30 a week for a few years ...also rife is a 1 time investment ...

--------------------
Blue

Posts: 1538 | From southwest | Registered: Dec 2015  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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Sorry to hear about your bf. Just a couple comments right now.

There are quite a few studies suggesting morphed is part of lyme. Some refer to it as ACA (acrodermatitis chronica atrophicans).

https://www.ncbi.nlm.nih.gov/pubmed/24093617

Check out these pictures of various late and early rashes. It may take a while to load the pics (large ones) especially if you are using a cell phone.

https://sites.google.com/site/marylandlyme/rashes--photos

Hope that helps!

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20332 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Tincup
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And yes, the "morphed" is found in the USA. Often, but most docs don't recognize it.

We have a serious problem with dermatologists especially. They don't bother to LOOK into the literature and just stick some sort of label on it. Sad, and shameful.

You said... "Said same doctor is sending him to an infectious disease doctor even with "CDC" negative testing. I'm hoping the Lyme dr will treat him with only 2 positive bands. He is through UPMC in Pittsburgh."

Lyme doc is in Pittsburgh or ID doc?

ID docs BAD. Don't go! Bad.

You said.. "dermatologist wants to put him on methotrexate for the morphea." You are right, NOT good.

You said.. "he also just became (tested) a type 1 diabetic out of nowhere"

Fairly common with Lyme. Sorry he is having this situation too.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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PS- You are a good gf for wanting to help him.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20332 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Badtick
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All good info. I second the Buhner Protocol. His books are cheap and the treatment is relatively affordable too. You can prepare many of the remedies by buying the bulk herbs from his listed sources.

One of the easiest ways of understanding how Lyme and company may be affecting the situation is to start a treatment and see how you react.

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Catgirl
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Primary care docs suck. Even worse are infections disease docs, they are clueless about lyme (they follow old diagnosis and treatment guidelines). Stay away from all of them. Only a good lyme practitioner can help him.

I agree with Tulips. Stephen Buhner is the master of herbs for lyme. I take them every day and other herbal tinctures. He has several books on lyme and co infections, all good.

I haven't read all posts above but want to add that a gluten free diet will make him feel better. Also dairy free and sugar free. Sugar, dairy and gluten all cause inflammation = pain. Gluten free is the starting point.

I am not big on antibiotics but you might want to read Cure Unknown (Weintraub) too. Also, many lyme patients travel, even fly to see a good lyme doc. The docs can do phone calls after that.

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

Posts: 5418 | From earth | Registered: Mar 2011  |  IP: Logged | Report this post to a Moderator
Catgirl
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I forgot to mention acupuncture can help him right now (worth doing).

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

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TF
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If your boyfriend would like to see a good lyme doctor right away, there is a good one near Washington, D.C. that has little or no wait.

You can drive there in about 4 1/2 hours.

Let me know if you want the name. He will treat him with the positive test results that he already has.

He doesn't take insurance, which is true of nearly all good lyme doctors. So, you may need to ask family or church to help with the high cost of the first appointment.

When I was sick with lyme, waiting until May was like being consigned to hell for 4 months. So, I hope you two will consider this and figure out a way to make it work.

You only have to come to the doctor's office in person once every 3 months. The other months, you will talk with him through Skype or telephone.

Let me know if you want the name. I am sure he would treat him for at least lyme disease if you present those test results.

I hate to think of him waiting to see someone in May who may not even treat him!

I grew up in the Pittsburgh area, so I have become familiar with the lyme docs in that area. The doc I am recommending to you is much better than the ones in your area.

Many people from the Pittsburgh area are coming here for their lyme treatment. We have a lot more lyme disease here, so our lyme specialists see a lot more of it.

This doctor's practice is basically 100% lyme disease. He had the disease himself. I am sure you would be very happy with this guy.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
lookup
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quote:
Originally posted by tulips:
A few years ago, I got myself up off my sick
bed by taking one Cat's Claw capsule a day for a couple of weeks Till I was strong enough to go to my closet and get out my box of Lyme herbs and
start the Buhner Protocol again.

tulips- you should pay yourself $80,000 for doing such good work! [Wink]
I jest, but it is true.

Posts: 764 | From Northwest | Registered: Sep 2014  |  IP: Logged | Report this post to a Moderator
tulips
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Thanks lookup and good luck iraya. Please let us know how this turns out.
Posts: 653 | From Northern Virginia | Registered: Oct 2014  |  IP: Logged | Report this post to a Moderator
   

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