Topic: CFS, Fibro along with Lyme? or Lyme by itself?
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I am very, very confused.
After I was hospitalized, the ID Dr referred me to a Rheum to rule out Lupus.
He ruled out Lupus, but diagnosed me with Fibromyalgia and CFS.
Now I don't know what I have...is it bacterial?, viral?, all of the above? none of the above?
I have lots of stealth viruses that are now IGG positive.
My NK cells are now non-functional.
A CFS Dr would say: the viruses in the past (all IGG) caused the immune system to crash. You just need to build the immune system back up.
The Rheum said: You need sleep. Take Elavil for sleep and Salsalate for inflammation and pain and you will be fine.
My LLNP says: You have parasites (I am sure of that), mold, viruses, heavy metals, borrelia, babesia and ehrlichia.
Treat the parasites, mold and viruses and the immune system will take over to kill the rest.
I am so confused.
I don't know which path to choose. Since I've been off of Lyme treatment for almost 2 months, my symptoms are back full force...so much so, that I have made an appt to return to my previous LLMD (who had me on 53 diff things).
I just want to quit all this and go on vacation to Hawaii...but I would be too sick to enjoy it.
posted
In the beginning before we figured out Lyme and coinfections were an issue, I got the same diagnosis.
I believe that Lyme causes Fibro and CFS symptoms. From those I know that are better, once they are in remission, the rest takes care of itself.
Hang in there. It does get better, but Hawaii does sound good!!
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I forgot to add...the Lyme and co symptoms can always be explained away (I drive myself crazy waffling back and forth, "maybe it's not Lyme, maybe it's CFS/Fibro" "maybe I'm on the wrong path"):
-creaky knees=getting older, weight gain, out of shape
-sore left side of neck: maybe I need chiropractic help
-sometimes it's sore right side of neck: " "
-sore left shoulder: " "
-sometimes it's a sore right shoulder: " "
-creaky neck: " "
-Headaches: maybe I just get headaches
-brain fog: hmmm?
-low grade fevers: maybe 100.3 isn't really a fever
-fatigue: maybe I'm just overweight and de-conditioned
-Heart palps/tachycardia: deconditioning
-Sensitivity to light/sound: hmmm, I don't know...or like my previous PCP said, maybe I developed Sensory Processing Disorder at 38 yrs old.
-Twitchy eyes: maybe I have a bad anxiety disorder
-jaw pain/burning: maybe I have dental issues, even though I get my teeth checked every 6 months.
-fractionated sleep: maybe I have an anxiety disorder, or just sleep issues
-Dry eyes/ dry mouth: maybe I was just born that way
I swear, when there is no firm diagnosis (meaning, clinical dx) and I never got better with treatment, it can really do a number on my confidence level that I'm fighting the right thing.
Is this symptom list, along with those lab results, in my signature, screaming out Lyme to you guys?
I hope it helps you make up your mind that you want to give a good try to the lyme disease treatment which will possibly cure you or at least improve your condition, since there is no cure for CFS or fibro.
Posts: 9931 | From Maryland | Registered: Dec 2007
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
"Treat the parasites, mold and viruses and the immune system will take over to kill the rest."
Sorry, I do not agree with this advice. Not to say you don't have to deal with them one way or another, but the immune system is not going to knock out all that other stuff without some help.
And it looks like you got the short straw with genetics too.
Posts: 2888 | From USA | Registered: Mar 2004
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Thanks faithful I'm going to Hawaii someday...but I have to get well first.
TF: These key points from Dr. Donta's speech really hit home:
"Treatment of chronic Lyme disease also seems to be gender-dependent to some degree, with men generally having more speedy and complete recoveries compared to women."
My husband was treated and kept getting better and better. He is now on herbs to maintain...and he had prior steroid use.
That has led me to question why I wasn't responding to treatment as quickly.
Also:
"Even the joint pains and occasional arthritis appear to be neuropathic in origin, as anti-inflammatory agents such as ibuprofen and other nonsteroidal anti-inflammatory drugs (NSAIDS) have little if any effect on the pain."
I took the Salsalate 2, 2x/day for a week and it did absolutely nothing to help my pain and inflammation.
Finally, he says:
"There are 10-20% who do not respond� generally those with a strongly positive Lyme test."
I did not have a strongly positive test. Only a couple of bands showed up.
poppy: I agree. That's why I'm adding back my former LLMD. With an immune system that has completely non-functional NK cells now, I need some help killing off the bacteria too.
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I'm going to Hawaii someday...but I have to get well first.
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