has anyone experienced that their chronic Lyme has made them develop Chronic Fatigue Syndrome (CFS)?
Since mid April, I have experienced a sudden worsening of symptoms. This started all of a sudden when I tried out new abx. The reaction was so bad, I had to stop the new meds. I also developed something new for me, a persistently sore throat, and my LLMD mumbled 'hmm, almost looks like CFS symptoms'. This was 6 weeks ago.
I went back on my old meds but since my sore throat did not go away, even after 6 weeks, I have had my throat checked with an ENT but he could not find anything.
I just checked out CFS on wikipedia and it seems that there is a link between Lyme and CFS. Sore throat is one of the CFS symptoms... I am now trying to get a hold of my LLMD to see what he says about it and what I should do.
Anyway, I would like to hear from people that have chronic Lyme and that were later diagnosed with Chronic Fatigue Syndrome. Please share your experiences.
Thanks,
Tim
Posted by butchieboo (Member # 12063) on :
Uhhh....YEAH....
CFS is ONE of my main symptoms and would probably be most of the other lyme patients.
You're just lucky it did'nt get to you sooner.
Believe me....CFS is a symptom of LYME DISEASE, not the other way around...
so is the sore throat....among other things.
BB
Posted by Visual Afterimage Man (Member # 10435) on :
Yep... many CFS patients are actually misdiagnosed Lyme patients.
Posted by timaca (Member # 6911) on :
actually you may also have Epstein Barr Infection. (EBV)
Read about the Stanford Trial (scroll down the page a bit).
Then click on the testing links and read those and show them to your doctor.
A friend of mine (who has lyme) also is infected with EBV and HHV-6. One of her many problems is a sore throat.
I may be infected with HHV-6 too. My first titre was high. The blood is being retested (second test) as I type.
Timaca
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by tvalentijn: Since mid April, I have experienced a sudden worsening of symptoms. This started all of a sudden when I tried out new abx. The reaction was so bad, I had to stop the new meds.
That's a HERX. The sore throat is a symptom of Lyme. The abx brought it out.
Many here were MISdiagnosed CFS first. Keep treating the Lyme.
You might try going back on the NEW meds. Back off the meds if you herx again. The meds should improve the sore throat eventually.
Check with your LLMD before doing anything.
PS....Many here also have EBV.
[ 28. June 2007, 10:18 PM: Message edited by: Lymetoo ]
Posted by tvalentijn (Member # 5255) on :
but to have a sore throat for 2 months...? That's a loooooooooooong herx....
Posted by peter j (Member # 11825) on :
Hi Tim,
CFS is only a consequence of CDC guidelines (not recognizing lyme). CFS does only mean that you don't have energy etc, and we have excluded all "known" causes, so CFS is the only diagnose left
There are zero, and I mean zero CFS-patients in Northern Norway (2006). And the tick can't survive the harsh climate there in Northern Norway. Coincidence? I think not.
There are 18000 CFS patients in Norway. And none in the Northern region.
(some people travel, and get the diagnosis anyway, but in 2006 there were zero registered CFS there)
Posted by Blackstone (Member # 9453) on :
Fatigue, diagnosed of CFS is often a primarily Lyme symptom. I know its my worst one.
Look into the EBV connection, but realize that 90% of people WILL come back with an EBV positive titer. Think about all the people you know who have ever had mono. Having mono, and even getting over it, will create antibodies that will show up as positive, probably for the rest of your life. This of course, doesn't mean you have an active infection now.
Its very difficult to evaluate if EBV is what's giving you trouble for this reason.
Posted by Al (Member # 9420) on :
If CFS and lyme are in fact different then I suspect that they are co-infections, One is a bacterium the other a virus and they have a synergetic relationship (ie) one affects the immune system preventing the effective treatment of the other. This may be the reason Sanford Univ. has had success with an antiviral tharpy treating CFS . They are currently doing a second trial.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by tvalentijn: but to have a sore throat for 2 months...? That's a loooooooooooong herx....
But you stopped the meds that brought on the symptom. The very meds that COULD clear it.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Al: If CFS and lyme are in fact different then I suspect that they are co-infections, One is a bacterium the other a virus and they have a synergetic relationship (ie) one affects the immune system preventing the effective treatment of the other.
Very plausible!
Posted by Annxyz (Member # 9097) on :
I think they are one and the same and that time will prove it .
If every CFIDS person had an Igenex test , the Fibro and Fatigue Centers" would change their names to " Lyme Busters Infirmary" .
The Fibro and Fatigue Centers use Igenex and find sooooooo many of their patients are LYME cases ( LIKE ME!)
Posted by Al (Member # 9420) on :
I didn't say they were the same. I suggested that a person could have two infections that affect the immune system in such a way preventing effective treatment or Immune esponse.
If you have two infections and one is lyme with a diagnosis of CFS then you would test positive for lyme even though you still have a viral co-infection. This was suggested at the lyme symposium in a slide presention by a LLMD.
This may be a reason why ABX have a poor cure rate with many relapses.
If you are on ABX. for 2-3 years and are still sick then something else is going on. The question is WHAT?
Posted by lymednva (Member # 9098) on :
Al said
quote: If you are on ABX. for 2-3 years and are still sick then something else is going on. The question is WHAT?
Or it could mean you were undiagnosed for so many DECADES that it will take longer than 2-3 years to see a cure. Posted by Lymetoo (Member # 743) on :
Or that you have undiagnosed and untreated Babesia.
Posted by Annxyz (Member # 9097) on :
Typically "CFIDS " patients test pos for several viral and bacterial infections. SO DO LYME PATIENTS!
The white cells , our defenders, are weakened because they are inhabited by a bacterial parasite - lyme. Thus thay can not fight infections or invaders well at all.
I think HHV6, CMV, chlamydia, mycoplasma, are just the end result of a weakened immune system - most likely burdened by lyme.
I may be wrong , but this is my theory.
Think about it . There are "Fibro and Fatigue Centers " everywhere now ! A large population of people are being labeled "fibro" cases . It is hard to believe that CFIDS or Fibro epidemics have just sprung out of nowhere resulting in the need for these clinics everywhere .
I had fibro pain until I had several months of ABX . I am still sick , but have no pain now ( significant ).
The sad thing is that there is SOOOO much money to be made on these conditions that we will never see a cure .
Posted by Al (Member # 9420) on :
In 1993 we had a lyme group that had 7 core people with confirmed lyme disease 2 died and the other 5 are still sick after 14 years of every ABX known. one was on Rocephin for 4 years streight with combinations of orals added along the way. Treatment for Lyme Babesia and bartonella was included. I know one person that pre paid his funeral and put all assets in trust for his kids. This is what lyme has done to some people. There are now thousands of lyme victims in our area alone, (Connecticut). My srteet alone has 7 people with lyme.
Sorry I didn't mean to get off track.
I really like the way all of you are thinking on this topic, looking at all the posibilities. My best wishes to all of you ! --- PS. This was just published in the CIFIDS chronicle,
There's evidence of more frequent latent active infection with various herpesviruses and enteroviruses. The herpesviruses include Epstein Barr, HHV-6 and cytomegalovirus. Other infectious agents, like bacterium that cause Lyme disease, Ross River virus and Q fever, can also trigger CFS.
Al
Posted by tvalentijn (Member # 5255) on :
Lymetoo wrote:
quote: quote:Originally posted by tvalentijn: Since mid April, I have experienced a sudden worsening of symptoms. This started all of a sudden when I tried out new abx. The reaction was so bad, I had to stop the new meds.
That's a HERX. The sore throat is a symptom of Lyme. The abx brought it out.
Many here were MISdiagnosed CFS first. Keep treating the Lyme.
You might try going back on the NEW meds. Back off the meds if you herx again. The meds should improve the sore throat eventually.
Check with your LLMD before doing anything.
PS....Many here also have EBV.
Thanks Lymetoo. I got a hold of my LLMD yesterday. I am actually going on vacation to Mexico for two weeks tomorrow. Since it's sunny I will stop the tetracycline; I will continue the Flucanozole.
Then when I get back we will probably try the Tindamax again. The combination Tindamax / Minocycline / Flucanozole started this whole thing. It was the first time that I used a cyst buster. The strange thing is (strange according to LLMD) is that my reaction was after only a few days, whereas the Tindamax takes about two weeks to get into your system.
I hope - and I mean TRULY hope - that I can get back on those meds and that it will help me take the next step. Or if I could only get back to where I was in March I'd be happy.
Posted by butchieboo (Member # 12063) on :
Way back in Dec98 after my first relapse comming off only orals I had labcorp run a comprehensive infectious disease panel.... I was positive for both bacterial and viral agents... CMV EBV Herpes 1 thru whatever Polio myelitis and Equine virus or two thrown in as well...
My conclusion was that either these virus are crossreferenced with lyme disease or they are some co-infections that ride along with the bacterial infection of BB.
Sometimes even fungals show up as I once had what the ENT duck told me was "athletes foot of the EAR".
The evidence of our TBI's having qualities of Bacteria,Virus and fungus may be proof that this disease is genetically engineered...or can mother nature be that diverse(rhetorical question)..
I don't really want to go there but just something to ponder.
I'm going to email this to a friend I have down in florida who runs a CFIDS/FM support group because they have lumped these two diseases into one designation and I can't remember what they call it now...
Why did I post here...oh yea...my comprehensive infectious disease panel findings....
So you see it is very possible to have these co-infections along with BB; or one may have at some point in their lives been positive for
these virus,bacteria or fungus and either our immune system is just letting the testers know this or the immune system IS OVERBURDENED with
Lyme and co-infections thus making it ineffectual against previously beaten down and continuously controlled agents which in turn present with their accompanied symptoms.
Don't forget that BB spirochetes are "GREAT IMITATORS" symptomatically of other diseases. Perhaps they mimic the disease in the testing of these diseases as well....
Could it be that ALL these previously named bacterial, viral and fungal attacks on our immune systems are just ONE culprit/with coinfections????
That would be too simple....YEP....EVERYTHING CAN'T BE LYME!!! LOL
BB
Posted by timaca (Member # 6911) on :
Blackstone~ If you go to www.hhv-6foundation.org and click on "testing" and read about elevated IgG antibodies, it will give you some clue as to whether or not a person could be dealing with an active viral infection.
A very high IgG is not normal if your middle age.
As an example: go to www.hhv-6foundation.org. Click on "forum" then HHV-6 and myocarditis. The story there is of my husband....who has high viral titres.
He will be seeing a knowledgable viral ID doctor in July.
In my case, I do believe I have lyme. I think it weakened my immune system. My HHV-6 titre is high at 1:320. So, I may have that now too. My blood is currently at Focus lab getting retested.
Timaca
Posted by listenswithcare (Member # 10719) on :
I was misdiagnosed CFS and Fibromyaligia for 7+ years before finding out it was really Lyme.
In those years I saw a homeopathic doctor (amoung others). He did not know I had Lyme, but he treated me for EBV, toxoplasmosis, fungus, and other viruses. I had chronic sore throat until his first one or 2 rounds of treatment.
Now I get sore throat as part of a herx, but it does not last and last.
I think we get all kinds of nasty things when Lyme kicks our immune systems in the rear. With the homeopath clearing all the other junk, I was at least able to function and work.
Would herx off the homeo meds, too (that's how they work). Fungals made me more fatigued. Viruses brought on the muscular pain big time. He would treat and it would get better (after herx), but then it would come back again - he never understood why.
Then I had the (second) Igenex WB - and there it was. Couldn't keep the other nasties down because I had Lyme (and bartonella).
So, I second the EBV, other viruses, etc. theory.
Robin
Posted by Lymetoo (Member # 743) on :
OH!!!! Tindimax....cyst buster!!! Those cyst busters are H*** on wheels!! Take it easy with them!!
Posted by Kayda (Member # 10565) on :
Hi another real possibility to check out is Candidiasis. If you are on antibiotics, the antibiotics not only kill the bad pathogens, but also the good, friendly bacteria. Sore throat, fatigue are symptoms of Candida as well. Usually there is thrush, a white or cream to yellow coating on your tongue. Do you have that?
If so, get some Nystatin or Diflucan or Terbinafine to start treating that.
Kayda
Posted by Al (Member # 9420) on :
This was the first study by Sanford Med. CTR.
Study Design: Patients with high IgG antibody titers against HHV-6 and EBV who were suffering from debilitating fatigue and central nervous system dysfunction for more than one year (median 3 years, range 1 to 8 years) were treated with 6 months of valganciclovir in an open label study.
Results Nine out of 12 (75%) patients experienced near resolution of their symptoms, allowing them all to return to the workforce or full time activites. In the nine patients with a symptomatic response to treatment, HHV-6 IgG titers dropped from a median value of 1:1280 to 1:320 (p=0.271), and EBV-VCA-IgG titers dropped from 1:2,560 to 1:640 (p= 0.008). Clinical significant hematological toxicity or serious adverse events were not observed among the 12 patients.
I wish these patients were also tested for lyme. If these patients had confirmed lyme and the treatment with valganciclovir "cured " them then it would prove that a virus was preventing successful treatment of lyme. The other co-infections would have to be considered if treatment with valganciclovir failed.
Butchieboo is on the right track as is Listenswithcare. The Fungal problem (Kayda) would be an opportunist based on this theory although Dr. Schardt cured himself with antifungals and ABX..
It's kinda like playing the Lotto, Only the right combination wins.
Posted by butchieboo (Member # 12063) on :
Have you ever tried the clorox cure for thrush?
You can look it up but I used 1teaspoon in four ounces of warm water and swished and gargled agout four mouthfulls...
I rinsed thourally(sp) and then had a couple of acidopholos capsules handy to chew on so as to start regrowth of good bacteria over quick growing bad bacteria.
Worked for me!
BB
P.S.
Don't swallow!
Posted by timaca (Member # 6911) on :
Al~ It is my understanding that the participants in the Stanford trial that you mentioned were tested for lyme, and found to not have it.
Of course, you might ask what testing etc was used....don't know that.
However, it is obvious that their viral titres were high and that they improved on anti-viral drugs.
Good for them!
Hopefully, some day we will get well too!
Timaca
Posted by aiden424 (Member # 7633) on :
I think HHV6, CMV, chlamydia, mycoplasma, are just the end result of a weakened immune system - most likely burdened by lyme.
I may be wrong , but this is my theory
I agree, I tested positive for HHV6 and Epstein Barr too. My LLMD thinks that if we can get the Lyme under control my immune system will take care of the other stuff.
Kathy
Posted by Kayda (Member # 10565) on :
Kathy,
I've heard that exact same theory. I think it carries a lot of weight. Our immune system is constantly keeping things in check.
I think this is also why people with Lyme often get Shingles. The immune system no longer keep it in check.
Kayda
Posted by dontlikeliver (Member # 4749) on :
The chronic sore throats are a Lyme symptom. Many of us were misdiagnosed with CFS before finding it was Lyme, me included, for 15 years nearly.
Your LLMD sounds a bit weird to say that.
Posted by 5dana8 (Member # 7935) on :
I don't to get in the virus or lyme or both discussion..just wanted to add I had a chronic rt sided sore throat with swollen glands for the first 7 years of being sick & untreated with Lyme & co's.
When I did get treatment the sore throat went away eventually but some of the swollen lyme nodes are still present with me ~ for most of my 20 years with chronic lyme.
Posted by Myco (Member # 9536) on :
CFIDS and Lyme and separate immune system disorders, though many infections overlap and many are misdiagnosed with CFIDS when they in fact have Lyme.
Read Hillary Johnson's OSLER's WEB and you will see that the outbreaks in Incline Village and Lyndonville were airbourne (teachers in the same school got it as did many in the same orchestra). Could have been Mycoplasma, could have been Cpn (chlamydia Pneumoniae) but wasn't caused by a tick bite!
I think many here are confused in that your immune system can break down from an accumulation of pathogens. Borrelia is only one of many. Mycoplasma, Cpn, all the viruses. No one really knows which is the straw that broke the camels back.
![[bonk]](graemlins/bonk.gif)
![[Eek!]](eek.gif)
Those cyst busters are H*** on wheels!! Take it easy with them!!