CFS and Fibermyalgia

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LadywLyme
Regular Member


Date Joined Aug 2009
Total Posts : 55
   Posted 8/18/2009 5:19 PM (GMT -6)   
Has anyone been diagnosed with CFS and/or Fibermyalgia in addition to your Lyme and co-infections?

I was told my CFS and Fibermyalgia are a result of the Lyme.

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 8/19/2009 12:39 AM (GMT -6)   
my PCP put CFS on my disablitiy paper work, and then i had a nother DR ask if anyone has thought to check me for fibro. not one will do anything for my positive IgM lyme test.

i wish you well soon.
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


Stunned123
Regular Member


Date Joined Apr 2009
Total Posts : 114
   Posted 8/19/2009 7:40 AM (GMT -6)   
I was diagnosed with Fibromyalgia by the Infectious Disease Dr. who did not believe in chronic Lyme. I feel FMS always has an underlying cause and is usually a "trashcan" diagnosis. In my case it is Lyme. I feel once I treat the Lyme, I have a feeling the FMS symptoms will be gone. That of course is just my own opinion.

minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 8/19/2009 9:08 AM (GMT -6)   
Fibromyalgia was the first diagnosis I got from My PCP who knew nothing about my condition. Several years later after seeing 32 doctors I was diagnosed with Lyme and co-infections. I thought for sure after treating Lyme for 2 1/2 years with IV and tons of orals the fibro symptoms would be gone. That was not the case. But I did find a cure of sorts for the debilitating fibro symptoms some of which were severe pain in shoulders, back and neck.

That cure seems to be Thryoid medicine. It seems that I was on too low a dose for too log a time. When I first got Lyme I was diagnosed with Hashimoto's and put on Armour but the dose was never increased as it should have been because we kept blaming all of the symptoms on Lyme and co-infections. I am now taking 3 times the amount of Armour that I had been taking. For the past 5 weeks the pain is totally gone along with many other symptoms. I feel I am ready to have courage to attempt to go off Lyme meds again. I see my LLMD in a few weeks.

It seems that Thyroid tests can be about as unreliable as Lyme tests in that the numbers and positive or negative results don't always correlate with what a person needs. For thyroid One needs to see a doctor who will experiment with meds in spite of tests that show the thyroid is "fine". Lyme and thyroid issues many times go hand in hand. The symptoms can overlap as well making the challenge even greater. As if we Lymies need more challenges.

Blessings
Diagnosed 2003 Lyme, Babesia, Bartonella, Micoplasma,Hashimotos Thyroiditis. Have had since early nineties.

Outstare The Darkness--------The Light Will Come!


LadywLyme
Regular Member


Date Joined Aug 2009
Total Posts : 55
   Posted 8/19/2009 1:24 PM (GMT -6)   
Thanks everyone!

I was worried I was the only one out there!

I was first diagnosed with Fibromyalgia after seeing 8 different doc with 8 different diagnosis. I, too, felt this was a "trashcan" diagnosis! For that reason, I went to a group of doctors who specialize in Fibromyalgia.

My first appointment, I got diagnosed with Fibromyalgia & CFS and I walked out with a grocery bag of medications, prescriptions, and orders for lab work.

When the lab came back, I was positive for Lyme, 3 co-infections, reverse T-3 high (thyroid), low vit. D, low serotonin, NKC of 7, etc, etc, etc...

I was actually relieved! This means there really is something wrong with me and it's not in my head, so I don't have those trashcan diagnosis after all, right??? Wrong!

Doc says the CFS and Fibermyalgia is a result of the Lyme and I definitely still have those diagnosis.

I was just wondering if there was anyone else with a similar experience. I am still trying to educate myself on all of these diagnosis.

I'm on so many meds that surely they will all go away eventually!

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 8/19/2009 2:29 PM (GMT -6)   
Hi Lady!
I have the dxes of Fibro & Chronic/Acute EBV. Some docs what to label me with the CFS as

well. I do also have Hasimotos', but have yet to start on thyroid meds - that's next!!

I'm not so sure my sx will ever completely resolve- my EBV titers are still so very high, and as for the Fibro - I have ALL of the

pressure points for fibro - I think it's 18. the last time I was in to the doc, he used that little hammer thingy on my knees & I jumped

completely off of the exam table!!!! Well, needless to say, my doc gave me Hydrocodone - 10 mg 2x'x a day!!!!

I am getting ready (financially) to start going 100% homeopathic - starting with KingBio's Lyme tonic. I really believe that I need to get

off of 'typical' meds, as they have not made much difference - I was infected over 40 yrs ago, actually. That's why I believe that even

though I have been on 300 mg's of Mino each day didn't make positive, long lasting (for a Lymie at least!) improvements for me.

I wish every one better health & peace~
Trav
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


LadywLyme
Regular Member


Date Joined Aug 2009
Total Posts : 55
   Posted 8/19/2009 3:43 PM (GMT -6)   
Wow Trav,

You must be my twin!

I, too, have acute EBV...off the chart high! I know about jumping off the table as well! I have a couple of meds for pain, Vicodine and Tramadol. I go back and forth with them. Hate taking pain meds but hate the level of pain if I don't worse! I take as needed but that's usually 2+ times a day.

I take meds to help me sleep also (4 different kinds).

My IBS is better with a digestive support supplement I get from my doc.

The doc I see uses both RX as well as non conventional supplements. I hope I'm in good hands with him. He is an MD.

When I google Lyme, their site always pops up but I don't see them advertise the docs as LLMD. They do say they specialize in Lyme. Is that the same thing?

I've done acupuncture which did help with pain but I am unable to get out of the house 2x a week to go there anymore. Once a month, the 2 hour drive to my doc does me in.

I also worry about my immune system being so low. I pretty much have confined myself to the house. Not that I really feel well enough to get out anyway.

Thanks for your reply!

What is Mino?

Hope you have success with your new approach!

Wishing you the best!

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 8/19/2009 5:03 PM (GMT -6)   
LadywLyme said...
Wow Trav,

You must be my twin!

**********************************

Well from what I just read, we have most definitely gone through a lot of similar things!!!
*************************************

I, too, have acute EBV...off the chart high! I know about jumping off the table as well! I have a couple of meds for pain, Vicodine and Tramadol. I go back and forth with them. Hate taking pain meds but hate the level of pain if I don't worse! I take as needed but that's usually 2+ times a day.

*************************************
I also have hydrocodone (10 mgs-- 2 x's a day) & tramadol!!! (50 mgs - up to 4 x's/day) And, like you - absolutely hate taking pain meds. Actually I hate taking any meds daily!!! So I use them when they can at least ease the pain b/c I just can't take it anymore!!
*************************************

I take meds to help me sleep also (4 different kinds).

**************************************
Me too - 3 'scriptes : trazadol (300mgs), & hydroxizine (100mgs ?) & 5mgs of hydrocodone - plus I take 5 mgs of melatonin, and 2 different 'herbals' for sleep. Even with all of that - I have plenty of nihgt I can't sleep more than 1 hr at a time still!! =( =(
**************************************

My IBS is better with a digestive support supplement I get from my doc.
***************************************
I take 40 mgs of dicyclomine, stool softeners, citrucel, generally drink at least 2 qts of clear water (have a lot of nausea issues too) & push as much liquid down me as I can!!! I can usually get 4 -6 qts of fluid each day. Since I had to "give back"(tee hee!) my gb, I also now take a multi-enzyme probiotic after any larger meal.
**************************************

The doc I see uses both RX as well as non conventional supplements. I hope I'm in good hands with him. He is an MD.
***************************************
Do you mean a regular Medical Doctor? That's all I have right now - even though he is amazingly open, knowledgable, doc who doesn't have "God Issues", he told me just 2 weeks ago, that he was 'in over his head with this LD". I "needed to find someone how knows more about LD than he does". That kinda means me, as I know more about LD, it's co's & Masters. Which doesn't say too much about the mds around here!!!
***************************************

When I google Lyme, their site always pops up
but I don't see them advertise the docs as LLMD. They do say they specialize in Lyme. Is that the same thing?
***************************************
A doc's office advertising that it 'specializes' in lyme SHOULD be able to help more than an uneducated doc. I would check them out more thoroughly, give them a try - who knows??? Maybe they can at least do SOMETHING that will help you!!!!
**************************************

I've done acupuncture which did help with pain but I am unable to get out of the house 2x a week to go there anymore.
**************************************
I did acupuncture therapy with GREAT results. Too bad we had to move on so soon after we found him!!! He also included Chinese herbal med along with the acu. Best I ever felt!!!!
**************************************

Once a month, the 2 hour drive to my doc does me in.
**************************************
I only have to drive about 45- 50 min for my gp. He is right near to the hosp, which is where I tried to do my latest phys. therapy - it was warm water therapy!! Oh man - did it ever feel sooooo good!!! But I couldn't keep driving myself up there 2 x's per wk!! Ended up with quite a relapse over that!!! :+( :+(
**************************************

I also worry about my immune system being so low. I pretty much have confined myself to the house. Not that I really feel well enough to get out anyway.
**************************************
Same here - i use as much caution as I can to protect my immune sys. Using disinfectants where ever I can.
**************************************
Thanks for your reply!

What is Mino?
***************************************
"Mino" is one of the abx "cyclines". I prefer to only type Mino instead of it's full name; Minocycline. It is a very powerful abx, from what I understand. I did learn that it is one of just a few abx that can cross the blood-brain barrier. Good for a LD or Co of the brain!!!
***************************************

Thank you so much for answering my post!!!

Hope you have success with your new approach!
*****************
Thank yo so very much for encouraging words!! Of course wishing you health & peace!!
***********************
Wishing you the best!

Take care~
Trav
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/19/2009 7:44 PM (GMT -6)   
Hey everyone,

I just want to add here that no one should up any medication without their doctors consent. Upping thyroid medication on your own can be very dangerous. Make sure your doctor knows.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


LadywLyme
Regular Member


Date Joined Aug 2009
Total Posts : 55
   Posted 8/19/2009 8:44 PM (GMT -6)   
CajunGrl,

I agree and hope that wasn't implied in this thread. I didn't see it but I'm a little foggy at the moment.

I am on thyroid medicine. He started me on a low dose which gets increased every week. After four weeks, I am supposed to be at the level I will stay on.

It's a little strange to me though; I take it first thing and go back to bed for an hour because I can't have anything to eat or drink for an hour after taking it.

Thanks for your input.

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 8/19/2009 8:56 PM (GMT -6)   
Yes, I was dx'ed with fibromyalgia and chronic fatigue along with the Lyme disease.... I also have severe depression and anxiety (because I have LD, fibromyalgia and chronic fatigue - lol!) All of the diagnosis just went hand in hand. The one good thing about the multiple diagnosis was that it added more information and fuel toward my Medicare SSDI disability claim and I'm sure they helped secure it's approval.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
10/01- Igenex and CDC LD positive
Rx's: Wellbutrin 300, Paxil 60, Xanax 5, Acidophilus, Invanz IV, possibly Gammaglobulin, Flagyl, HBOT  
 


LadywLyme
Regular Member


Date Joined Aug 2009
Total Posts : 55
   Posted 8/19/2009 10:25 PM (GMT -6)   
JELAINEP,

Oh my!

While I'm not happy to see that you have been blessed with the same wonderful things I have been, it's nice to know I'm not alone.

I, too, suffer from depression, anxiety and panic attacks. I've been on Wellbutrin and valium for about 10 years. I always thought it was my stressful career and just took it in stride.

Are you better since your 2001 diagnosis? I sure hope so!

It's good that there are programs for people with long term illnesses. I have heard SSDI can be difficult to prove. Good for you!

My best to you. Keep your chin up!

alliebridge
Regular Member


Date Joined Mar 2006
Total Posts : 67
   Posted 8/20/2009 2:09 PM (GMT -6)   
I'm glad that thyroid was mentioned. Armour was one of the first things my LLMD put me on (diagnosed hypothyroid) and even the initial low dose was enough to make my muscle pain nearly completely disappear.

I also developed food allergies because of Lyme, so when I eat any of the culprits, I do get joint and muscle pain. If I avoid them, I avoid the myaligias.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 8/20/2009 2:54 PM (GMT -6)   
Wow Allie!! Thanks for sharing that!!!

CG- I also never want to imply changing of dosage, or self-medicating is the way to go. If I did or ever do- I'm so sorry!!!

Although I'm in a tough situation right now & have so many &'s, I have never wanted to imply that self tx is a good thing.

Trav
- Traveler
"Conditions": Lyme Disease (neuro, gastro, bone, brain, muscle, hearing involved), STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/20/2009 9:49 PM (GMT -6)   
LadyWLyme and Traveler,

That post was directed more towards Minerals. I'm glad she found a way to deal with her pain but it sometimes worries me that someone will read her post and try this on their own. She upped her meds on her own. I'm not sure if anyone saw her first post. That's what I'm replying to. It's very dangerous to up any medicine on your own, especially thyroid meds.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


LadywLyme
Regular Member


Date Joined Aug 2009
Total Posts : 55
   Posted 8/21/2009 1:00 PM (GMT -6)   
Oh!

I went back and read it again. I guess I missed that completely. Thanks for the clarification CG!
"If you always do what you've always done; you'll always get what you've always got."

(Advice given to me at the beginning of my career by a five star General)


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 8/21/2009 2:42 PM (GMT -6)   
Thank you CG!
Trav
- Traveler
"Conditions": Lyme Disease (neuro, gastro, bone, brain, muscle, hearing involved), STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 8/21/2009 11:07 PM (GMT -6)   
I was diagnosed with fibromyalgia in 2000 by my GP, then in 2001 by a rheumatologist.

I became progressively sicker over the years, with symptoms atypical of fibromyalgia, including low-grade fevers and a significant hand tremor. Long story short, I was lucky enough to stumble upon a locum who referred me to a LLMD in late 2007, when I was diagnosed with both babesiosis microti and Lyme disease.

In my case, I believe I was either misdiagnosed with fibromyalgia, or that IF I had fibromyalgia at all, it was Lyme-induced. My gut instinct tells me it was a misdiagnosis, however. If fibromyalgia is caused by CNS dysfunction, what is the underlying cause?

Best Regards,
Cara
*Oral Abx Combo Tx since Jan/08*
Lyme disease - clinical dx ’08; Babesiosis (Positive IgM/IgG) '08;
GERD '05; Essential Tremor ’02; Fibromyalgia ’00; Osteoarthritis; Depression; IBS; Interstitial Cystitis


minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 8/22/2009 10:41 AM (GMT -6)   
Cajongirl, I never meant to imply that upped my meds on my own, my doctor who was in the documentary "Under our Skin"was aware of the experiment I was conducting with the thyroid meds. You need to comprehend what you read better before you accuse anyone of anything.. I definately stated in previous posts that no one should up their meds on their own.

That being said however I wanted to stress that for anyone who knows nothing about thyroid and the treatment of it that because of the many ignorant endos and other MDs many patients are forced to experiment on their own because the numbers on tests do not always tell if a patient needs meds or not.. Just like they are forced to expermient with meds for Lyme. Many doctors who understand this take a wait and see approach to thyroid meds increasing the dose until symptoms go away just they do with Llme. That is one of the many points I was trying to make.

Long before you elected yourself to be moderator this site it was always for learning and sharing of experiences weather we agree or not. It was not meant for a moderator to dilute the contents of anything one writes (unless it is offensive) as I have noticed you have done in the past with some member's posts. Many people are on this particular site because they do have to experience "big brother" tactics from moderators as they do on other Lyme sites. I have been on this site a long time and have not experienced any of that until some of your posts.

In addition many of your comments and suggestions are way off base to unsuspecting members of this site. Moderators should only post about what they know not just suggest things off the top of their heads. Sorry if you are offended, but the truth hurts sometimes. I hope that after reading this post you accept it in the spirit it was written which is for educational purposes only. I also hope you won't edit it.

Blessings
Diagnosed 2003 Lyme, Babesia, Bartonella, Micoplasma,Hashimotos Thyroiditis. Have had since early nineties.

Outstare The Darkness--------The Light Will Come!


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 8/22/2009 10:57 AM (GMT -6)   
*** I am not medically trained!!! This is only my humble
opinion*****

I'm beginning to believe that all of the things Lymies are "regularly" dxed ( or mis-dxed) with (ie- Fibro, Hashimotos Thyroiditis, GI issues, etc, etc) all have the underlying cause of TBIs'.

It's just that we as Lymies, get passed around like fresh bread at the dinner table, & those are the only things uneducated docs can come up with.

My personal experience with Fibro has been very interesting, as medical personelle (sp?) who check me for it, always find that I have ALL of the 'pressure points' for

Fibro. The same goes for most of the different dxes (or mis-dxes) I carry.

I'm not sure if this is helpful or not - but hope it will help someone to understand me at least a bit more~
Trav
- Traveler
"Conditions": Lyme Disease (neuro, gastro, bone, brain, muscle, hearing involved), STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 8/22/2009 11:09 AM (GMT -6)   
IMHO - Easy Minerals-
we can all get the 'wrong impression', esp. when dealing with many people with so many sx.

and also IMHO -
at least we have a mod here for LD!!

Now don't get me wrong - I have had some people get the wrong impression because of something I posted. It's not a pleasant experience, and I for one get really tired of people

getting the wrong impression about me & my illnesses - on line & at home!! rolleyes
And - I, in no way am 'attacking' or 'defending' anyone!
- Traveler
"Conditions": Lyme Disease (neuro, gastro, bone, brain, muscle, hearing involved), STARI, RMSF, Hashimoto's Thyroiditis, Lyme Arthritis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


spaztick
Veteran Member


Date Joined Oct 2006
Total Posts : 851
   Posted 8/22/2009 1:48 PM (GMT -6)   
minerals & CajunGirl,

minerals, You've always been very helpful and knowledgeable on this forum, and I have received very good advice and information from you. In your post dated Aug 19th, which I just re-read, it certainly doesn't imply that you were increasing dosage of the thyroid medication on your own.

Therefore, I believe that CajunGirl mistakenly misinterpreted what she read. In today's post, however, you say that "many patients are forced to experiment on their own" which is neither here nor there in my opinion, because it's true. Saying that many patients experiment on their own isn't necessarily saying they are doing so without the knowledge of the doctor.

CajunGirl, I believe you could have been more effective had you asked for clarification from minerals prior to commenting, and, I also believe it would have been more appropriate to comment to minerals directly at the outset, instead of causing many to wonder if they had broken a forum rule. In addition, it wasn't initially clear to me what you meant when you said "no one should up any medication" ~ I think it would have been more clear to say "increase the dosage"...

What remains crystal clear is the fact that the whole thing turned out to be a real thread killer, unfortunately.

Love to Everybody!

Cara
*Oral Abx Combo Tx since Jan/08*
Lyme disease - clinical dx ’08; Babesiosis (Positive IgM/IgG) '08;
GERD '05; Essential Tremor ’02; Fibromyalgia ’00; Osteoarthritis; Depression; IBS; Interstitial Cystitis

Post Edited (spaztick) : 8/22/2009 1:57:50 PM (GMT-6)


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/22/2009 7:44 PM (GMT -6)   
Minerals,

Your very first post implied that you were basically upping your medication without your endo knowing. I even agreed that maybe the pain could be coming from your thyroid. BUT, when you post in other posts saying this:

>Fibromyalgia was the first diagnosis I got from My PCP who knew nothing about my condition. Several years later after seeing 32 doctors I was diagnosed with Lyme and co-infections. I thought for sure after treating Lyme for 2 1/2 years with IV and tons of orals the fibro symptoms would be gone. That was not the case. But I did find a cure of sorts for the debilitating fibro symptoms some of which were severe pain in shoulders, back and neck. 

That cure seems to be Thryoid medicine. It seems that I was on too low a dose for too log a time. When I first got Lyme I was diagnosed with Hashimoto's and put on Armour but the dose was never increased as it should have been because we kept blaming all of the symptoms on Lyme and co-infections. I am now taking 3 times the amount of Armour that I had been taking. For the past 5 weeks the pain is totally gone along with many other symptoms.<

This is what I have a problem with. YOU need to make your posts clearer so we don't have new people coming in here thinking their pain is from their thyroid and upping their dosage on their own. 

Minerals, I was not rude to you in that post. There was no reason for you to say that I "dilute" any post. If I edit anything out, it is because that person has broken the rules or I was told to edit something out. 

I can tell you that I have many friends here. I try my best to keep friendships and do what I am supposed to do. It's hard. Either way, if I read something that could potentially harm a member, I am going to be the first one to speak up. You should have been more clear when you posted those last few posts. You never stated in that last post that your Lyme doctor knew about upping your dose. If I'm a newbie, I'm not looking back on your "old" posts. I'm looking at the one you "just" posted. A newbie may think it's okay to up their thyroid medication and THAT is VERY dangerous! Again, I am going to protect the members here.

Minerals, you may think I am a "big brother" and that is fine. In my eyes, I have to look after and protect the members here. This forum barely had a Moderator before. Alfers was getting tired of the fighting and everything that was going on here, so she was showing up less and less and this forum wasn't being Moderated correctly. This forum was almost closed down before Melody and I stepped in. So, I say to you Minerals, if you don't like how I Moderate this forum, you are welcome to find a place that suits you.

 >In addition many of your comments and suggestions are way off base to unsuspecting members of this site. Moderators should only post about what they know not just suggest things off the top of their heads. <

That comment above was very uncalled for and unprofessional. I did not attack you at all. When I post, it comes from the heart and it is either from experience or something I have researched long and hard. I am going to post when I want to post if I have something that may benefit that poster. Again, if this is not the place for you, please find a forum that you are more comfortable with.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 8/22/2009 8:09:35 PM (GMT-6)


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/22/2009 7:48 PM (GMT -6)   
Spaztick,

I appreciate your concern but I can take up for myself. I do not need to be told what should have or should not have been done.

As a Moderator, I am letting everyone here know that if this thread continues to get off topic and the arguing continues, it will be locked and Peter will be notified.

Also, any post arguing or belittling anyone will be deleted

Let's stay on topic. Off topic posts will also be deleted.

Thank you.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 8/22/2009 8:07:02 PM (GMT-6)


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 8/22/2009 8:37 PM (GMT -6)   

*** I have many questions on all these things!

I hope to help get this thread off to a little more of the orginal beginning....  Because, it seems in all my searching that all these things: low thyroid, CFS, fibro, lyme, co-infections, MS,  EBV, HHV6, (parvovirus B19), depression, anxiety -- ALL of these things seems to be so intertwined.  It seems that those of us who know we have lyme, believe that lyme is the culprit in all of our cases. 

We know that lyme frequently attacks the thyroid. We know that lyme compromises our immune system. So in many, not ALL cases, it seems that lyme has caused all of the other infections/diseases/syndromes.  

However, at this stage of my knowledge so far, I must also post this question:  Is it possible that one or more or several of the above has left us more vulnerable to Lyme? That maybe, just maybe, lyme is often resolved by our immune system, unless it is already compromised -- say, by heavy metals, chronic viruses, or such?

For me, I realized a sudden downward spiral and diseased feelings since a certain tick bite. It was not until that bite that I had problems w/ my thyroid, the fibro type pain, chronic fatigue, worsening of depression, and an anxiety unlike any other I've ever experience.

It is believed by many that certain viruses or infections precipitate CFS, MS, fibro, etc.  Here, that seems to make a whole lot of sense.  But they haven't quite figured out how these (MS, Fibro, CFS, etc) are actually triggered. 

I don't know yet if it's as unanswerable (is that a word?) as it seems to be.

I do have questions for Traveler, Lady w/ Lyme, and  others of you who have jumped in on this one:

What is CNS?

How high are your EBV numbers??  I determined that mine indicate chronic mono, not acute.

How high are your babesia numbers?  Mine were defined 'high enough to indicate acute babesosis', but could also possibly indicate a past infection.

At this point, I do not consider fibromyalgia to be a trash diagnosis or whatever some of you have been calling it. I believe that it is clear that people are, in fact, suffering from a disease, illness, ailment, whatever, that is defined as fibromyalgia. Same for chronic fatigue and MS.  I believe these can possibly be triggered by many different things, including lyme, a virus, certain stress factors, etc. and not always lyme. There is too much unknown in these diseases!

Because lyme seems to be a culprit in these frequently enough, I believe that those w/ diagnosed lyme tend to want to blame all of these cases on lyme, which would not necessarily be correct.

Definitely, immune system issues are all intertwined w/ ALL of these, including lyme.

Sometimes, I even wonder if this is the reason many Drs do not want to believe in chronic lyme. Because maybe MOST people ARE cured w/ 4-6 weeks of abx. And maybe most people do not go on to suffer from chronic lyme.  There may be TONS of people who have been infected w/ lyme (and/or co's) whose bodies eventually resolve the infections.  And we would never be hearing from these people, neither would the DRs.

Could this possibly be part of the reason for many MD's denial of chronic lyme?

Sorry, this is so long. And sorry, but I've been experiencing increased cognitive issues this week (the infection or the cure??)  I just wanna state that we have to approach ALL of these health issues w/ open minds or we will never get to the bottom of them!

Trav and Lady w/ lyme:  Please do not forget to tell me your EBV and Babesia lab numbers, OK?  Cause I spent an entire weekend researching these, went over these results w/ my LLMD (if you can call it that), and I believe I understand, but am not certain. Hopefully my next Dr will be able to interpret these better than my LLMD did.

 



Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.
What don't these nasty bugs cause? 
CD57= 60, so we're in pretty good shape.
 

Post Edited (+Lyme) : 8/22/2009 8:46:02 PM (GMT-6)

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