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My wife's story. Could use some input

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Posted 7/15/2017 1:27 PM (GMT 0)
Hi everyone. I'm new here so please bare with me.
about two months ago I found a tick on my wife. Being a New Yorker my first instinct was to get her checked for lymes. We however live in Florida where lymes is apparently not very prevalent so she didn't seem concerned and we left it. about 6 weeks ago she woke up with a sore throats went to the doctor and was told she had strep. She was put on antibiotics and sent home. She felt a lot better the next day so she started back to the gym. She noticed that her heart rate was very low and she started having heart palpitations and a tightness in her chest. She stopped the antibiotics to see if it was a reaction. The palpitations continued and I admitted her to the emergency room. All her tests came back unremarkable. She was released with low blood pressure and a low heart rate. At this point she started with flu like symptoms. Fatigue, a lot of joint pain especially behind her knees, ringing in her ears, tingling in her fingers, hot flashes where she sweats like she's been running then she can't get warm.
Another trip to the doctor and another round of blood tests. She was given a shot of steroid and put on amoxicillin for ten days. Her liver enzymes are high and wbc count is low. She's been tested for hep, lupus, ray and lymes all came back negative.

This last trip to the dr we asked for doxycycline. She was given 10 day supply and mobic for the pain. She's now losing her hair. We're going to a different doc on Monday as the one we've been going to refuses to give a diagnosis.
To sum up:
Night sweats
Can't get warm
Tingling fingers
Tinnitus
Stiff next
Itchy skin
Severe Pain in joints
Losing hair
Elevated liver function
Low wbc
Swollen lymph nodes (this has progressively gotten better)
Severe fatigue

Everything I've read this sounds like a hallmark case of lymes.

I'd like some input. Does this sound like lymes? I'm sure I left some stuff out. Thanks in advance
Posted 7/15/2017 2:15 PM (GMT 0)
Hi Figaro - welcome to the forum but so sorry about your wife. Others will be along shortly with more info but I just want to say that what your wife is experiencing does sound like tickborne illness. If you've been reading about it then you've also probably read that testing is grossly unreliable. There are tests from a specialty lab that are more reliable but even those are not foolproof making diagnosis of these illnesses a clinical one.

What you need to do is find a Lyme literate doctor (LLMD) who can better assess your wife's case. If you'd like referrals from forum members in your area you can start a thread with your location asking for LLMD recommendations or you can also contact ILADS - ILADS.org - for referrals in your area.

Do you know if the doctor you're seeing on Monday is Lyme literate?

There is also a lot of information on this forum at the top of the main page under "New to Lyme" that may help get you started.
Posted 7/15/2017 3:00 PM (GMT 0)
Thank you for the response. I don't know if the doctor on Monday is lyme literate. I do know that living in Florida there's a myth that lymes isn't here. So that's a bit worrisome. I will see if I can get a referral from one of the members. Thank you again
Posted 7/15/2017 4:10 PM (GMT 0)
Birds don't stop at the state borders and they can distribute ticks or other lyme carrying insects.

I found a blackberry bush in my yard. I worked very hard to get rid of those stinkers years ago. I think a bird did his duty and deposited those seeds from his poop right in my yard. Anyway, I don't buy the no lyme disease in Florida.

Lyme testing by Labcorp or Quest if very unreliable. My first lyme test was with Quest and I was negative. A month later I tested with IgeneX and was positive.

Here are some labs: You can contact them and ask their procedures for testing.

DNA Connexions - https://dnaconnexions.com/index.html
DNA CONNEXIONS
4685 Centennial Blvd,
Colorado Springs, Co 80919
Tel: 719-219-2826
Toll Free: 888-843-5832
Fax: 719-548-8220
Email: [email protected]

Advanced Lab - https://dnaconnexions.com/index.html
Advanced Laboratory Services Inc.
501 Elmwood Ave.
Sharon Hill, PA 19079
Phone 855-238-4949
Fax 855-238-4946

Igenexx - http://www.igenex.com/
795 San Antonio Rd, Palo Alto, CA 94303, USA
US: (800) 832-3200
International: +1 (650) 424-1191
Email: [email protected]

Sorry your wife is so ill. She is lucky to have a husband that is willing to research for her.
Posted 7/15/2017 4:13 PM (GMT 0)
Oh gosh, here is a list of docs in FL. I have no experience with these docs, you have to do even more research, sorry.

/sites.google.com/site/lymedoctors/florida

Here is another place you can email and request information regarding a Lyme Literate Medical Doctor. /globallymealliance.org/

And Welcome here. Sorry you had to find us.
Posted 7/15/2017 4:19 PM (GMT 0)
get her lyme tested and come back and share the results. Igenex is the best lab, it's $210

print the requisition online and hand it to her next doctor and insist on it, due to the tick bite.
Posted 7/15/2017 5:02 PM (GMT 0)
Hi Figaro, welcome!

First - thank you for being so involved with your wife's illness and researching for her.

I think you are correct in thinking it's a tick borne disease she has. - I think it's a good idea to schedule an appt. with a LLMD.

I have some listed for Florida - you can email me and I will send you names. We don't post the names on her for privacy reasons.

Also, if you prefer members recommendations, then start a new thread: "Looking for LLMD in Florida" Then you need to enable your email through "My Profile" so members can send you names privately.

If you're wanting to test before seeing a LLMD - I suggest the Igenex Lyme WB Igm and IgG for $210. It's the best bang for your buck. Igenex specializes in tickborned disease testing.
Posted 7/15/2017 5:08 PM (GMT 0)
I also wanted to say that because she had a known tick bite plus symptoms consistent with LD, the testing isn't really necessary. That is enough to diagnose LD.

But, many of us still want the piece of paper saying it is LD. proof, validation...whatever you want to call it.
Posted 7/15/2017 5:10 PM (GMT 0)
Many of her symptoms I had

Night sweats - yes
Can't get warm - yes - intolerance to cold
Tingling fingers - yes
Tinnitus - yes (mine is pulsatile though, not ringing)
Stiff next - yes - stiff neck.
Itchy skin - no
Severe Pain in joints - yes joint pain
Losing hair - lost hair in the beginning - even my eyelashes
Elevated liver function - yes
Low wbc - yes
Swollen lymph nodes (this has progressively gotten better) - yes - one in clavicle
Severe fatigue No - not this one for me
Posted 7/15/2017 11:57 PM (GMT 0)
Wow thanks everyone. That's a lot of information to go through. I hate that she has this and hate it for anyone else who has it too
Posted 7/16/2017 12:06 AM (GMT 0)
Also the doctor gave her a steroid shot and prescribed her Mobic for the pain. I've been reading that the steroid is a no no. Thoughts on Mobic?
Posted 7/16/2017 12:22 AM (GMT 0)

Figaro42 said...
Also the doctor gave her a steroid shot and prescribed her Mobic for the pain. I've been reading that the steroid is a no no. Thoughts on Mobic?

I hadn't heard of Mobic - so looked it up and see it's also called Meloxicam - and recognize that because my Dr gave me some free samples when I was in a lot of pain early on when Lyme caused severe pain in my neck and left shoulder blade area.
I tried it for a week - it wasn't helping at all - when I told my Dr - she said I needed to take it for several weeks.
I continued the take it for three or four weeks - with no relief - then I looked up the risks and stopped.

It is a non-steroid anti-inflammatory but does come with risks.
I wasn't willing to continue taking it - since it wasn't helping me anyway.

If it helps your wife with her pain - it may be worth the risks.

(All meds have their list of risks and side effects)
Posted 7/16/2017 12:24 AM (GMT 0)

caramba said...
get her lyme tested and come back and share the results. Igenex is the best lab, it's $210

print the requisition online and hand it to her next doctor and insist on it, due to the tick bite.





Which test though? There seems to be dozens of them
Posted 7/16/2017 12:27 AM (GMT 0)

Girlie said...

Figaro42 said...
Also the doctor gave her a steroid shot and prescribed her Mobic for the pain. I've been reading that the steroid is a no no. Thoughts on Mobic?

I hadn't heard of Mobic - so looked it up and see it's also called Meloxicam - and recognize that because my Dr gave me some free samples when I was in a lot of pain early on when Lyme caused severe pain in my neck and left shoulder blade area.
I tried it for a week - it wasn't helping at all - when I told my Dr - she said I needed to take it for several weeks.
I continued the take it for three or four weeks - with no relief - then I looked up the risks and stopped.

It is a non-steroid anti-inflammatory but does come with risks.
I wasn't willing to continue taking it - since it wasn't helping me anyway.

If it helps your wife with her pain - it may be worth the risks.

(All meds have their list of risks and side effects)

She's only been on it for 5 days and it doesn't seem to be doing anything. Any suggestions for pain relief? She's afraid to take Advil because her liver enzymes are high
Posted 7/16/2017 12:44 AM (GMT 0)

Figaro42 said...

Girlie said...

Figaro42 said...
Also the doctor gave her a steroid shot and prescribed her Mobic for the pain. I've been reading that the steroid is a no no. Thoughts on Mobic?

I hadn't heard of Mobic - so looked it up and see it's also called Meloxicam - and recognize that because my Dr gave me some free samples when I was in a lot of pain early on when Lyme caused severe pain in my neck and left shoulder blade area.
I tried it for a week - it wasn't helping at all - when I told my Dr - she said I needed to take it for several weeks.
I continued the take it for three or four weeks - with no relief - then I looked up the risks and stopped.

It is a non-steroid anti-inflammatory but does come with risks.
I wasn't willing to continue taking it - since it wasn't helping me anyway.

If it helps your wife with her pain - it may be worth the risks.

(All meds have their list of risks and side effects)

She's only been on it for 5 days and it doesn't seem to be doing anything. Any suggestions for pain relief? She's afraid to take Advil because her liver enzymes are high

Cannabis works great for Lyme pain. Many find pain relief in a sauna. Epsom salt baths too can provide some relief. Basically anything that helps with inflammation like turmeric/curcumin. The good news is that pain clears up with treatment.
Posted 7/16/2017 12:47 AM (GMT 0)
Hi Figaro42 - I'm very sorry to hear of your wife's health struggles.

I found that a heating pad gave me a little bit of relief from the pain when my rib cage was hurting, so maybe give that a try.

Your wife's story is similar to mine in that I too was diagnosed with strep last Nov and was placed on Amoxicillin. I had symptoms emerge, and I think what I experienced was a herx or die off reaction. I know how scary it is to go from a strep throat infection to what the heck is happening to me!?!?

Thinking of you both! Denver1
Posted 7/16/2017 1:14 AM (GMT 0)

Figaro42 said...

Girlie said...

Figaro42 said...
Also the doctor gave her a steroid shot and prescribed her Mobic for the pain. I've been reading that the steroid is a no no. Thoughts on Mobic?

I hadn't heard of Mobic - so looked it up and see it's also called Meloxicam - and recognize that because my Dr gave me some free samples when I was in a lot of pain early on when Lyme caused severe pain in my neck and left shoulder blade area.
I tried it for a week - it wasn't helping at all - when I told my Dr - she said I needed to take it for several weeks.
I continued the take it for three or four weeks - with no relief - then I looked up the risks and stopped.

It is a non-steroid anti-inflammatory but does come with risks.
I wasn't willing to continue taking it - since it wasn't helping me anyway.

If it helps your wife with her pain - it may be worth the risks.

(All meds have their list of risks and side effects)

She's only been on it for 5 days and it doesn't seem to be doing anything. Any suggestions for pain relief? She's afraid to take Advil because her liver enzymes are high

Do you know if Mobic is safe with her higher liver enzymes?
Posted 7/16/2017 1:16 AM (GMT 0)

Figaro42 said...

caramba said...
get her lyme tested and come back and share the results. Igenex is the best lab, it's $210

print the requisition online and hand it to her next doctor and insist on it, due to the tick bite.





Which test though? There seems to be dozens of them

Just get the Lyme Western Blot IgM and IgG - total of $210.
I think the test req #s are 188 and 189.

Call Igenex and they will send you a test kit.
Posted 7/16/2017 3:06 PM (GMT 0)

Denver1 said...
Hi Figaro42 - I'm very sorry to hear of your wife's health struggles.

I found that a heating pad gave me a little bit of relief from the pain when my rib cage was hurting, so maybe give that a try.

Your wife's story is similar to mine in that I too was diagnosed with strep last Nov and was placed on Amoxicillin. I had symptoms emerge, and I think what I experienced was a herx or die off reaction. I know how scary it is to go from a strep throat infection to what the heck is happening to me!?!?

Thinking of you both! Denver1


Thanks Denver. How long did the hex last for you? She's sleeping all day today. I'm hoping that what she's going through now is the herx reaction. Thank you for the info
Posted 7/16/2017 4:56 PM (GMT 0)
Hi Figaro -

I don't know if this is helpful, but here's what happened to me. I was given 875mg Amoxicillin twice a day and less than 12 hours later I had a ripple of numbness down my right arm. It quickly dissipated 2-3 mates later. As each day progressed the periods of numbness and tingling grew in length and intensity. Not sure f this makes sense but I believe I was herxing from the Amoxicillin, and because I wasn't detoxing I continued to get sicker. So I took 10 days of the abx all the while getting more and mor brain fog, neck stiffness and fatigue.

I saw a GP who said it's stress. Don't do much over the holidays, and within 4 days I was in the ER with numbness throughout my right side and all through my forehead and right cheek. I was also having periods of dizziness. Head CT showed nothing.

The ER doc blamed everything on anxiety and sent me home. I spent about 48 hours "sleeping it off", and another couple of days so exhausted. I believe the ER visit was the culmination of a migraine.

Then the brain fog began to lift, and I realized something was very wrong and docs weren't finding any answers. I won't overwhelm you with more info for now. Feel free to email me with any questions!

I hope your wife wakes feeling much better. She's very fortunate to have a supportive husband helping her find answers! Kudos to you for asking questions on her behalf!!!!

Peace, Denver1

So glad she has a loving husband helping her because
Posted 7/16/2017 5:49 PM (GMT 0)
All good responses so far.

I just wanted to add that it might be good to try milk thistle seed and/or burdock root tinctures to help reduce the liver enzymes. I've had to taken them all throughout my tx (3+ yrs) and they have kept enzymes down beautifully.

-p
Posted 7/16/2017 7:48 PM (GMT 0)
Also, epsom salt baths may be helpful for pain, detox and a boost of magnesium. Hang in there and what a great hubby! Your support will help her get better faster!
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