**Update**HELP! Possible misdiagnosis fibromyalgia might be Lyme disease**Update**

Is it Lyme?
9
Yes - 75.0%
3
Possibly - 25.0%
0
Probably Not - 0.0%
0
No Way Jose' - 0.0%

 
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JRuff84
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 12/7/2008 1:08 AM (GMT -6)   
Hey everyone. My name is Jon. Im brand new to the forums. Im seeking help for my fiance Sarah. Medically she is a mess... We live here in Portland, OR which I now know as the central hub for fibromyalgia "misdiagnosis of Lyme disease". Im sure you are all pretty familiar with the symptoms of fibro and the controversy surrounding it.
Well it is well known that fibro usually develops in adults 40+ but that didn't stop them from diagnosing Sarah when she was 15. While she displays many of the symptoms associated with fibro, some of them are simply from unknown or theorized origins. She competitively rode horses for years when she was younger but had to quit because of her deteriorating health. We don't know for certain if she was ever bit by a tick but do remember that when she was young did have what resembled a ring worm on her shoulder. In hindsight this could have actually been a tick bite. It worse... It finally got so bad that she had to finish high school at PCC because she wasn't able to attend normal school due to her poor health. Many days she couldn't get out of bed. Ever since she was diagnosed, they have pumped her full of everything from seizure medications, pain killers, anti inflammatories, and anything else you could think of. She is currently on a high dose of percocet immatrex and ultram.

The symptoms rapidly change and come and go in cycles of around 3 to 4 weeks it seems. We actually associated some of them with pms, but there are a number of them that are persistent and have been present for years which include severe migraine headaches "which are not directly associated with fibro", sever constant full body muscle pain, pain in her joints, severe back and neck pain which she has to constantly pop and crack, low fever, flu like symptoms such as fever, nausea and diarrhea, fatigue, abdominal cramps that cause her to double over and hyper sensitive hearing. Last one is kinda funny seeing how she used it to her advantage, she is one of the leading record producer/sound engineers in the NW. Unfortunately she has been unable to continue even that due to conflict of the need for long hours and her health. We did also always find it pretty odd that her and alcohol just don't get along. She can only have a drink before she's plowed and then gets a bad headache. The next morning looks like something out of a horror movie lol.

I checked the symptoms list from the lyme disease association's website and these are symptoms she exhibits often and severely at times...

*Persistent swollen glands
*Sore throat
*Fevers
*Sore soles, esp. in the AM
*Joint pain:
Fingers, toes
Ankles, wrists
Knees, elbows
Hips, shoulders
*Joint swelling:
Fingers, toes
Ankles, wrists
Knees, elbows
Hips, shoulders
*Unexplained back pain
*Stiffness of the joints or back
*Muscle pain or cramps
*Obvious muscle weakness
*Confusion, difficulty thinking
Difficulty with concentration,
*reading, problem absorbing
new information
*Word search, name block
*Forgetfulness, poor short
term memory, poor attention
*Speech errors- wrong word,
misspeaking
*Mood swings, irritability,
depression
*Anxiety, panic attacks
*Headache
*Light sensitivity
*Sound sensitivity
*Vision: double, blurry,
floaters
*Ear pain
*Increased motion sickness,
vertigo, spinning
*Off balance, “tippy” feeling
*Lightheadedness,
wooziness, unavoidable
need to sit or lie
*Tingling, numbness, burning
or stabbing sensations,
shooting pains, skin
hypersensitivity
*Dental pain
*Neck creaks and cracks,
stiffness, neck pain
*Fatigue, tired, poor stamina
*Insomnia, fractionated sleep,
*early awakening
*Excessive night time sleep
*Pain in genital area
*Unexplained menstrual
irregularity
*Irritable bladder or bladder
dysfunction
*Queasy stomach or nausea
*Heartburn, stomach pain
*Constipation
*Diarrhea
*Low abdominal pain, cramps
*Chest wall pain or ribs sore
*Head congestion
*Breathlessness, “air hunger”,
unexplained chronic cough
*Night sweats
*Exaggerated symptoms or
worse hangover from alcohol "we actually joke about this one quite often"
*Symptom flares every 4 wks.

I repeat, these are the symptoms she does have on a regular basis... In fact there were only a total of 13 symptoms on the list that she didn't remember experiencing, and those were along the lines of heart palpitations and loss of hair. So she's been dealing with these for years, remember she was 15 when diagnosed but around 13-14 when she started experiencing symptoms. She said they seemed to come out of nowhere.
Doctors have never actually even mentioned testing for Lyme disease believe it or not. She has been tested for quite a bit else. The most recent test they did showed that she had extremely low vitamin D levels and she has also been "diagnosed" with hypoglycemia via her way out of wack sugar/glucose levels.
The more I research the more freaked out I get. It seems that the systems in Oregon and Washington are utterly doomed when it comes to diagnosing and testing for Lyme disease. It seems nobody will properly test for it and every one want's to simply write it off to Fibro or Chronic Fatigue Syndrome. I know the feeling, I was diagnosed with Touretts Syndrome, ADHD, and OCD when I was young. It took moving to Tampa FL to get that diagnosis.
She's just getting worse, and we are so tired of the non answers.
So what do you guys think? Am I freaking myself out? Is this possibly lyme? Does anyone have advice for how to seek treatment, testing? Any LLMD's in the Portland OR area?

Thanks so much guys.
Jon

Post Edited (JRuff84) : 1/9/2009 10:36:37 PM (GMT-7)


dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 12/7/2008 2:11 AM (GMT -6)   
hi Joh! I think it can be lyme; try to tind a lyme literate doc, I personally would also try to get the tests done (elisa and westernblot); but the results can be negative even if you have lyme, due to week immune system which is not able to produce antibodies.
I hope so much that Sarah gets better soon; its very important to have someone who helps and cares like you do.
best of luck to you !

chief #7
Regular Member


Date Joined Apr 2008
Total Posts : 124
   Posted 12/7/2008 2:23 AM (GMT -6)   
Jon, smells like lyme.  I can identify with this.... "severe migraine headaches, neck pain which she has to constantly pop and crack" ...  Get her tested thru Igenex.  Google it, find a lyme literate immediately.  Good luck.
 
Chief

JRuff84
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 12/7/2008 2:37 AM (GMT -6)   
Question... I did find Igenex online. Looks like the best option by far. I know that Igenex doesn't deal with insurance claims but is there a way for it to be covered still? Maybe if a doctor or physician orders the test? And would I be correct in assessing the cost to be in the $400-$800 range? They have quite a few different packages it looks like as well. Which one is the recommended one? Were young and don't have much. Pretty humble times especially as of late...

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 12/7/2008 11:42 AM (GMT -6)   
It may be lyme but a lot of the symptoms also sound like bartonella. Definately don't give up. I think you are on to something and it is so much easier for ignorant docs to prescribe pain pills than antibiotics. Which I might add, would more than likely give Sarah here life back.

good luck

lillimul
Regular Member


Date Joined Jul 2008
Total Posts : 104
   Posted 12/7/2008 1:38 PM (GMT -6)   
Igenex doesn't deal with insurance claims but you can often get reimbursed (we did) by your insurance company by submitting the bill yourself to your insurance. Igenex will give you a copy of your statement to submit to your insurance company. testing for lyme and co-infections, I think would be the best way to check out lyme. Don't lyme and bartonella often go together? My husband was diagnosed with CFS and FMS for 20 years before testing positive with so many of the same symptoms you are referring to. good luck.

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 12/7/2008 4:21 PM (GMT -6)   
yes jon, wath lillimul said about testing for co- infections also would be best; sometimes abx don`t work sufficiently and then people start to check for co- infections transmitted by ticks; if you know that right at the beginning of treatment, you can probably make the best decision which abx you take.
good luck

phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 12/7/2008 4:45 PM (GMT -6)   
Well jon. I must say your fiance should feel very lucky about your persistance and finding this forum. You have checked off about 90% of the lyme disease and co-infections symptom list. I think that is a start, but it will be a long road, i will warn you now.
 
These dr's amaze me. What does swollen glands and night sweats have to do with Fibromyalgia? I still think fibromyalgia is just a label, caused by various possible infections such as lyme, bartonella, Chlamydia pneumonia or CMV virus.
 
I'll never forget the day i accidently stumbled upon the fibromyalgia forum of healingwell. I honestly thought i was in the lyme forum and started posting. Then i was attacked by the fibro moderators. I then came back here and told everyone about how die-hard these fibro people are and none of them are getting any better on the fibro treatments. Plus they were using our lyme patented words such as "lyme fog" but they called theirs "fibro fog", Such a shame that they have the exact same symptoms. The only difference is we are getting our lives back and they appear to get just temporary fixes. Then many of us from here would go over there and try to get them to take a lyme test from a credible lab. To make it more complicated, it is very difficult to get a positive lyme test. I'm sure many on here remember those days. We had to stop posting there because it got nasty, all we were trying to do was help.
 
Since the horses your fiance rode in the past most likely involved a farm setting. Then i'd guess that there were also cats involved in this horse/farm setting. I'm yet to see a farm that doesn't have tons of cats in their horse stables. Then you throw in the possibility of horseflies and fleas biting other animals and then her. I would not be surprised at all if there is also a bartonella componant to your fiances mystery. Lyme plus bart or babesia would be my first guess. It is hard to say but i'm just playing detective according to some of your info.

Post Edited (phsinvent) : 12/7/2008 10:42:35 PM (GMT-7)


phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 12/7/2008 4:48 PM (GMT -6)   
Also, go and ask everyone on this lyme forum. Ask how many of them have or had low vitamin D levels.

JRuff84
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 1/9/2009 11:33 PM (GMT -6)   
UPDATE: Sarah was clinically diagnosed with Lyme Disease on 12/31/08... Happy Newyear! You have Lyme! tongue . As strange as it may sound, this is actually such a beacon of hope for us. Finally there seems to be a treatment... something to help her get better. We are just having such a hard time dealing with the fact that this went untested and untreated, overlooked even as a possibility for so long. Even after going to an infectious disease specialist and being given a full blood workup and I use the term FULL lightly for obvious reasons, all they told here 8 years ago was that her body was fighting off some sort of infection... Thanks fer nothin mad She just started her first regiment of antibiotics and will soon be kicking it into "all hands on deck, fire at will" mode. We are still waiting for the tests from Igenex just for our curiosity sake, but I think we finally nailed the sob. yeah yeah yeah

Thankyou everyone and you will be sure to hear from us plenty. I've given the web address to Sarah and she will be frequenting the forums Im sure. Thanks again and I'll be sure to update if anything new comes up.

JRuff84
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 1/9/2009 11:35 PM (GMT -6)   
Oh what the heck...
yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah yeah.............. Happy dance!

Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 1/9/2009 11:54 PM (GMT -6)   
Congratulations!!!!!!!!!!!!!! How did that happen in Oregon I have tested Postitive 8 times and no Dr here in OREGON has ever diagnosed me. How is she feeling on antibiotics?
 
I would love to know who your Drs are.
 
Take care. 
Finding Peace In This Crazy World !
 
Beth
 
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS  APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007


SickInCT
Regular Member


Date Joined Nov 2008
Total Posts : 157
   Posted 1/10/2009 5:36 AM (GMT -6)   
Please listen to me, when I saw this post I immediately clicked on it because the same thing happened to me. You need to find a lyme literate medical dr asap! The longer this goes it will progress and get worse as it spreads to her nervous system and heart if it has not already. The lyme testing is very inaccurate (when returning a negative) but get tested anyway. Make sure you get the Elisa AND Western Blot. The reason being is that if it happens to bring back a positive you have some solid evidence to work with. If it brings back a negative don't trust it. Start off there and let us know how it goes.

Ask your Dr " Besides the blood test how would you distinguish mid-late stage Lyme disease from fibromyalgia/cfs?" "What are the differences in symptoms between mid-late stage Lyme and fibro"? Your doctor will probably follow up with a response like "there are no differences in symptoms" That's how my Dr responded. Then ask "Well then how do you know I have FM and not Lyme" Request a month trail on Lyme antibiotics to see if the condition improves or changes. They usually use Doxy but I found Amox worked much better for me. If your Dr is open minded ask for a combination of Doxy/Amox.

SickInCT
Regular Member


Date Joined Nov 2008
Total Posts : 157
   Posted 1/10/2009 5:40 AM (GMT -6)   
JRuff84 said...
UPDATE: Sarah was clinically diagnosed with Lyme Disease on 12/31/08... Happy Newyear! You have Lyme!


CONGRATULATIONS!!!!

smilewinkgrin smilewinkgrin smilewinkgrin smilewinkgrin

Believe it or not you are VERY lucky and this is VERY good news!!!
Just disregard my previous post, it was the lyme fog idea
Can you please share what antibiotics she is on and at what dosage?

Post Edited (SickInCT) : 1/10/2009 4:52:30 AM (GMT-7)


minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 1/10/2009 1:37 PM (GMT -6)   
That is a great start-having a positive diagnosis. Now do not forget the co-infections which are sure to be a possibility and a hinderance to healing if not treated. Be sure she is treated long enough and strong enough not just for one month. It is important to find a doctor who knows about lyme and will treat symptoms and not tests as far as co-infections go. You sound like a great boy-friend. Blessings

DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline
Outstare The Darkness--The Light Will Come!


JRuff84
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 1/10/2009 3:45 PM (GMT -6)   
So here is the crazy story. I found someone in here who shared a similar story, had Fibro for years before diagnosed with Lyme. She happened to live here in Portland turns out right down the street. After speaking with her, she informed us of the only LLMD in Oregon. Dr. R. She is a natriopath but does use antiobiotics and other meds with lyme seeing that its absolutely necessary. Not only is Dr R's office right down the street, but is in the same complex as Sarah's current doctor... Wasn't even half way through the exam when she made the diagnosis. After the full work up she informed her that she also believes that she has a co infection of Bart. So to start off, she is on 250mg of Amox 2x a day and will be upped the dosage along with some other antibiotics and probiotics soon.

Post Edited By Moderator (CajunGrl) : 12/2/2009 6:12:06 PM (GMT-7)


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 1/19/2009 1:10 PM (GMT -6)   
hey Jon,
You have so many posts...lol
I am too lazy to read them all. :>)
The poor girl has lyme of course. I mean yippie. gezzzz these dumb ass dr.s..
Anyways. Sounds like she is just like me, only I had the chest pains. But maybe she does not have bart too....good thing.
I would suggest getting here out to Arizona asap and get the girl better. So she can get back into her life and make some music and get drunk...lol
Since she was around horse all the time. She may have gotten it many times. And since there are 300 strains of lyme bet she got her share.
But she can get better. And fast...
good luck!
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 1/19/2009 1:22 PM (GMT -6)   
hey ruff,
Okay....read through all of the post...yawn....;>) Ok....I am going to rant just a bit...here goes. 250 of amoxy twice a day?
For a women who has been suffering for 10 years with lyme and bart? Are you kidding me? What next? A band aid for her broken leg?
My 5 year old was put on 400 mg of amoxy twice a day...and she weighs 40 pounds.
You are waisting time with that low dosage. Can't believe these Dr.s
Gosh they gave my dog Toto 1000 mg of doxy for his lyme and he was 15 pounds..and guess what? it did not work he still went lame. And that was because he had lyme for one year before we caught it.
Ok..I will calm down....lol
Your wife is going to needs agressive treatment. Like 6 hours a day with pints of meds. The popping pills that go into her stomach that mostly get passed when she pees is not going to cut it. The thing is, that dosage would not even work on a 11 mos old baby...right at infection. My 11 month old got more than that.
She has to get soaked in meds that will penetrate deep like the lyme has. Since it has had way too much time to move in and get into her deep tissue.
The good news. The lyme has not ruined her body....too much. And it is mostly like spraying the mud off of your car....
Look into envita in az. and get her better!
you can tap on me to inquire about it. My family had over 400 horses...gosh I loved riding too.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 1/19/2009 2:43 PM (GMT -6)   
I agree the dose is much too low. Find a doctor who knows what they are doing don't waste any more time. Blessings

DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline
Outstare The Darkness--The Light Will Come!


SickInCT
Regular Member


Date Joined Nov 2008
Total Posts : 157
   Posted 1/20/2009 7:07 AM (GMT -6)   
Martha's Vineyard said...
250 of amoxy twice a day?
For a women who has been suffering for 10 years with lyme and bart? Are you kidding me? What next? A band aid for her broken leg?
You are waisting time with that low dosage. Can't believe these Dr.s


What she said!!! shocked shocked

That's as bad as the doctors telling you to take an asprin for severe neurological lyme pain. My last doctor told me that she wouldn't give me any pain meds. She said "It's not like you have cancer or somethin, then I could understand"

Post Edited (SickInCT) : 1/20/2009 6:10:18 AM (GMT-7)


JRuff84
New Member


Date Joined Dec 2008
Total Posts : 13
   Posted 1/21/2009 8:56 PM (GMT -6)   
I made a booboo. Its not 250mg of amox... oops. it is 250mg of cefuroxime. She is also starting her on acidophilus, oral and topical magnesium, 2000mg of vitamin d daily and hxplx 2wice a day along side of hydrogen peroxide via I.V. once a week. what do you guys think? need to know if this is a good start or not right for her.

kitty9309
Regular Member


Date Joined Oct 2008
Total Posts : 163
   Posted 1/22/2009 8:46 AM (GMT -6)   
It is OK to start off on low doses to get the body used to it.

In the past, I have reacted very strongly (ER visits) to normal doses of antibiotics.

My doctor and I are taking the more cautious route of low and slow, versus shocking my body and then having to heal from that.

There is more to "Lyme" than just antibiotics. There is a lot of inflammation that needs to be reduced.

Congrats on getting her diagnosed.
14 years undiagnosed Lyme. I had a bulls-eye rash following a camping trip to NC in 1994. Swollen knees and replapsing and remitting vertigo followed for the next 14 years. All Lyme tests negative. Could possibly be B. lonestari due to being bit in the South.
Just began treatment with low dose Minocycline and Benicar.


WestCoastBabe
New Member


Date Joined Dec 2009
Total Posts : 8
   Posted 12/2/2009 5:11 PM (GMT -6)   
Hey Jon and Sarah,

First of all, how's Sarah? Is her treatment with Dr. R. helping?

I'm in Portland too and I saw Dr. R. back in 2006. I'd be curious to know more about your experience with her and I'd be happy to share mine (although it was short lived). If you're still out there, perhaps we can share info. I've had a hard time finding help here on the west coast. I have an appointment with a lyme MD in Seattle next week. Have you heard of Dr. M. R.?

Post Edited By Moderator (CajunGrl) : 12/2/2009 5:37:44 PM (GMT-7)

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