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» LymeNet Flash » Questions and Discussion » Medical Questions » Lyme & CFS & Fibro

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Author Topic: Lyme & CFS & Fibro
JBS
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I talked with my doctor about my recent positive Lyme test. My CD57 test was great, no problems. The EBV is also active. She said that I have Lyme & CFS & Fibro. She said that the Lyme could possibly have caused the CFS. That leaves me so confused. Should I even bother treating the Lyme?
Posts: 132 | From Texas | Registered: Apr 2012  |  IP: Logged | Report this post to a Moderator
desertwind
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Yes you should. If you don't treat and you have lyme you will become so very ill - like so many others who have had their lives destroyed by lyme.

CFS and Fibro are secondary to lyme (in many cases). Very common also for other viruses to come out when infected with lyme - EBV is very common to become active.

If she herself said lyme could have caused your "CFS" then why not treat the cause?

How about co-infections? Have you tested and/or do you have symptoms of any co-infections?

I would start treatment now...

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Lymetoo
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Treat what CAN be treated... LYME... the cause.

And yes, get checked for coinfections.

--------------------
--Lymetutu--
Opinions, not medical advice!

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JBS
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I just got tested for co-infections, don't have results yet. But my son just tested and he does not have co-infections. (LabCorp for both)
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Lymetoo
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The bad thing is that the testing is so pitiful.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95729 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
JBS
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I know. I don't have confidence in it - especially since my son is so sick and some things don't fit just Lyme. I will have to figure out how to raise money for him to test from IGeneX.
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dmc
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JBS print out the booklet from Lymepa.org

http://lymepa.org/Basics2009_rotated_landscape.pdf

pages of symptom Lyme and/or Tick Borne diseases can cause.

You may find it helpful for the doctor to see the list of your son's symptoms

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sixgoofykids
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quote:
Originally posted by JBS:
I talked with my doctor about my recent positive Lyme test. My CD57 test was great, no problems. The EBV is also active. She said that I have Lyme & CFS & Fibro. She said that the Lyme could possibly have caused the CFS. That leaves me so confused. Should I even bother treating the Lyme?

My fibromyalgia and CFS went away when I was treated for Lyme Disease. Get rid of the cause, and you get rid of those groups of symptoms.

--------------------
sixgoofykids.blogspot.com

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Robin123
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Fibromyalgia is Lyme. That was my diagnosis for 25 years, and it became full-blown 18 months after a known tick bite. Pain in the muscles and soft tissue, and brain/nerve chemistry off.

We're all different when it comes to what works. I was able to end all fibro pain in a week's time when I went round the clock on oral clindamycin, 150mg every 6 hours. Yes, I was on top of this that first month! Then I herxed and dropped back to 150mg 2x/day.

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shannon12
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Robin, I've had extreme fibro symptoms for 9 years now, started at the age of 21, diagnosed with lyme one year ago, been on aggressive treatment for a while now, my new syptoms since the lyme diagnoses are going away for the most part, but the sypmtoms I've lived with for nine years are not going away, like the widespread body pain and stiffness, chronic headaches in neck and head, extreme fatigue. I want to believe so bad that this was lyme all along, not that it's easy to treat, but more promising than fibromyalgia, but the truth is these symptoms are not going away,

A lot of people are saying i could have babesia also, but I don't know, I would have to go on additional meds that im on now and i'm just not convinced.

any thoughts on this?

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t9im
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Hi Shannon;

My daugher had lyme and babesia. The bone pain was the last symptom to go.

--------------------
Tim

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Catgirl
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I have to agree with Robin, fibro is lyme (same with CFS). I believe they are both just lame titles that were given to patients who had lyme.

I remember (think it was Doc Burrascano) saying (in either Under Our Skin, or DVD Putting Lyme Behind You) that lyme mimics so many diseases (great imitator) that the only way for them (docs) to know for sure what you have is to treat for lyme--if it goes away, it was lyme.

Have you seen Under Our Skin yet? You can download it from hulu (just google title and hulu and it will pull up). Also the book, Cure Unknown is really good (definitely worth reading).

It sounds like you are relying on blood tests. Lyme hides at an inter cellular level (doesn't float around in the blood stream causing antibodies to show up all the time), so the blood tests miss it (35-70% of the time). That's a considerable false negative rate.

The correct diagnosis for lyme is a clinical one. I had testing done at Igenex and quest. Quest's testing was actually more sensitive for both my husband and me (surprising).

The tests in addition to, but most importantly, the clinical diagnosis is how lyme is correctly identified/diagnosed. Anyone else will just miss it unless you happen to get lucky and it show up in your blood test.

Have you found a lyme literate physician (LLMD)? They are key to getting well. If you haven't found one, you can go to www.lymediseaseassociation.org and they will email you some names. Be sure you click on the ILADS link (International Lyme and Associated Diseases Society). ILADs docs are cutting edge.

Save your money for a good lyme doc (LLMD), even if you have to travel out of state to get one (worth it). The longer you let it go, the worse it can get.

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

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Catgirl
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JBS, I forgot to ask, what are your and your son's symptoms?

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

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shannon12
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I really am starting to believe this has been lyme for me all along, it's just hard to believe because I just don't understand how I was bitten at least two times by a tick but as I learned many people are.

Another reason, I was literally perfectly healthy one day and then within a few months i had full blown "fibro", I mean you just don't wake up one day with thyroid problems, severe immune dysfunction, and feeling like your dead

I could see the diagnoses of fibro is these problems happened slowly over time, I just feel so cheated like I could have had treatment years ago, wish I had all this info years ago , but i'm glad I have it now.

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Robin123
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Well, before the internet, all we had was fibro support groups, and NO ONE knew what was going on! We'd all throw anything at our bods to see what would stick, and report about it. Ha!

Like I drank oxygenated water from Mexico and all my psoriasis went away in 6 days! I looked at violet light flashing 6x/sec for 20 minutes, and my sense of smell returned, for 18 months!

That's how nuts all our "treatments for fibromyalgia" were - we didn't have a clue what was going on. I thought we might be all polluted!

And now that I know, I kinda get it, what was going on in response to what we tried.

So just be glad we have the ability to reach each other at least by computer now! And hopefully each of us will discover what treatments we respond to.

Btw, when I found out 6 years ago what my fibro dx really was - ie, Lyme disease from a known tick bite, I contacted as many of the old fibro friends as I could find,

and yes, by then, they had found out they had Lyme and co's. And I got one person to test through IGeneX, and they came back positive!

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Carol in PA
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quote:
Originally posted by Robin123:

I looked at violet light flashing 6x/sec for 20 minutes, and my sense of smell returned, for 18 months!


.
Okay Robin, I'd like to hear more about this.

My sense of smell is fading.

Aaack!


I've had two coworkers who told me that they had a poor sense of smell.

Both of them were later diagnosed with Parkinson's.

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sparkle7
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In many cases, it could be Lyme. In my case, the Lyme treatment did not work. It think Fibro & CFS can be caused by other things besides Lyme or co-infections.

We don't have good testing & there can be many causes of the symptoms of Fibro & CFS. I think it's good to try treating Lyme - especially if you tested positive - but, respectfully, I do think there are many causes of Fibro & CFS. Not just Lyme...

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Lymetoo
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Shannon.. you are definitely exhibiting classic symptoms of babesia. You won't beat Lyme until you beat babesia.

--------------------
--Lymetutu--
Opinions, not medical advice!

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sixgoofykids
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quote:
Originally posted by shannon12:
Robin, I've had extreme fibro symptoms for 9 years now, started at the age of 21, diagnosed with lyme one year ago, been on aggressive treatment for a while now, my new syptoms since the lyme diagnoses are going away for the most part, but the sypmtoms I've lived with for nine years are not going away, like the widespread body pain and stiffness, chronic headaches in neck and head, extreme fatigue. I want to believe so bad that this was lyme all along, not that it's easy to treat, but more promising than fibromyalgia, but the truth is these symptoms are not going away,

I had fibromyalgia since the 70's and was diagnosed with Lyme in 2006. My fibromyalgia went away completely with treatment. I was also treated for bartonella and babesia. The fibro was one of the last symptoms to go away because it was one of my first symptoms. The first symptoms are the last to go.

My fibro didn't clear for over 2 years. I haven't had any signs of it now since 2008.

--------------------
sixgoofykids.blogspot.com

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sparkle7
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I also read fibro type symptoms can be caused by exposure to aluminium... So, it can be other things. I'm not saying not to treat Lyme - but just because one thing may help "me" - I can't say it will do the same for everyone.

We are all different. I think each case is unique. Many people have been cured by antibiotics if they catch the tick right away. If one is ill for a long time - it could be a combination of many things.

Definitely good to rule out Lyme & the co-infections, though!

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annxyzz
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I tok abx for 3 years and my pain went away . However, the overall flu and fatigue remained.

I think artemesia annua ( Herb Pharm ) and grapefruit seed extract and rife have kept my pain away. I can not tolerate more ABX .

I do believe the pain can go away even with herbs. You have to keep lowering the pathogen load . Also , I really believe that taking 3 capsules each night of magnesium citrate make a huge difference in muscle issues for me, along with a good VIT D level. These have helped! If I do not take my magnesium a few days , I get muscle tightness and stiffness. It is a life saver.

My advice : work on pathogen load and raise glutathione level so your immune system can work FOR YOU . There are many herbs that can help if you can not tolerate ABX . If you look at Buhner and Zhang protocols, you can start with a couple of herbs and work up the dose. Believe me , you will feel the lyme dying off !

Many people get over the pain when the level of infection is lowered .

--------------------
annxyzz

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JBS
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Catgirl - Sorry so late getting back with you. In the process of moving and I'm behind in everything.

My symptoms are: arthritis neck, spine; joint pain, muscle pain, severe exhaustion, flu like feelings; GERD, IBS, sleep problems, migraines; inability to deal with stress; big time brain fog - diagnosed with Organic Brain Syndrome; orthostatic hypotension, POTS, hearing loss, and then all kinds of "smaller" problems like tinnitus, MVP, etc. I have constant reactivated EBV.

My sons symptoms are: severe joint pain, major GI problems - GERD, nausea episodes that last several days and sometimes requires him to go to hospital for fluid IV's, severe pain in abdomen - especially when under stress; had a grand mal seizure about 5 years ago, major attack of pancreatitis last year; high blood pressure and heart rate that is escalating (on second increase of blood pressure medicine and BP was 160/95 and heart rate was 168; extremely low immune system; inability to deal with stress. He also has reactivated EBV, but his doctor thinks this may be from his low immune system.

He was tested for co-infections, but did not test positive for them. I have been tested for co-infections, but don't have results yet.

Odd thing - my niece tested positive as well for Lyme and she has panic attacks and then recently has broken out in sores all over her body. After taking Doxy for one month she is seeing a remarkable turnaround.

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Keebler
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-
You say:

"Odd thing - my niece tested positive as well for Lyme and she has panic attacks and then recently has broken out in sores all over her body.

After taking Doxy for one month she is seeing a remarkable turnaround." (end quote)

-----

Why is that odd? Panic attacks are a classic symptom of lyme.

And skin trouble is not at all uncommon due to the toxic nature of lyme and the body's stress on all the detox organs.

But, doxy is NOT enough. I hope she is seeing a LLMD and getting comprehensive treatment, especially for the cyst form of lyme. Doxy, alone, can encourage lyme to become chronic.

Flagyl or other distinct action against the cyst form must be taken. Biofilm also needs to be addressed.
-

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Keebler
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-
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions - that can hold us back are discussed here.

==================

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=013239;p=0

(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation - whether LLMD or LL ND.
-

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Keebler
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Re: Flagyl / Tinidazole

http://www.ncbi.nlm.nih.gov/pubmed/21753890

Infect Drug Resist. 2011;4:97-113. Epub 2011 May 3.

Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi.

Excerpt:

. . . Conclusion

Antibiotics have varying effects on the different morphological forms of B. burgdorferi.

Persistence of viable organisms in round body forms and biofilm-like colonies may explain treatment failure and persistent symptoms following antibiotic therapy of Lyme disease.
-

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JBS
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The odd thing I meant was that she ALSO tested positive for Lyme along with me and my son. We live in Texas and that diagnosis is not all that common, so it seemed odd that we all three would test positive.

Thanks for the info on Flagyl. I just finished Cure Unknown and it really helped me understand a lot. I told her about cysts and she herself had read something about Flagyl. We won't get in to a LLMD until November.

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Keebler
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-
There are many assertive things you can do before Nov.

See the "How to find a LL ND" thread inside of those posted above. I know there is at least one LL ND in Texas. And articles there can offer suggestions for what to do during the wait.

Can you get on a cancellation list for the LLMD?
-

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annxyzz
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I know that experts say you must treat babesia to get rid of lyme, but the problem is that there are are a million posts here of people who have ingested a plethora of drugs FOR SEVERAL years ( sometimes a "COMBO" of drugs at one time ) and "babesia " persists .

And the same is true for lyme .

Logic would beg us to question whether we have correctly identified the source of the disease , or the pathogen causing the disease .

And if we have correctly identified the pathogen , then we appear to have few effective medicines .

--------------------
annxyzz

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sparkle7
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I've known people who did very aggressive abx & spent alot of money/time. They did not get well - sad to say.

I think it's worth it to try the abx but they don't always help everyone. I guess you have to give them some kind of time limit to see if they will actually work.

There may be many potential causes of what may be making us ill.

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