posted
My first diagnosis was CFS..back in 2004. I accepted that for 2 years and then looked for other answers.
Now I am thinking that was the correct diagnosis. Chronic debilitating fatigue is still my worse symptom which I have had now for over 4 years although it wasn't my first symptom.
I have been on various abx for over two years including IV Rocephin and Bicillin injections. I still have the persistant fatigue everyday and also unrefreshing sleep.
I now am losing hope that any abx will at least bring me up to 70 percent of what I was before. When do you say enough...
I see a LLMD in NY who has been wonderful. My WB had 34 IND-39 IND and 41 +++. My bart titer was 1:80 and Babs was 1:20.
I don't want to make this too long but I am so desperate and discouraged that I may never get well. My only other long term symptom is muscle twitching-pain-electrical sensations in my calf.
Anyone have any thoughts..thanks
Posts: 343 | From North Carolina | Registered: Oct 2008
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I firmly believe that CFS is nothing but a description of Lyme symptoms, just like Fibro. I too was given that 'diagnosis' in 1995. Hogwash!!!
2 years without improvement? Have you treated for coinfections? What have you done to rebalance your minerals and rebuild your immune system? Adrenal function? Thyroid? Have you also addressed detoxing?
It's all part of the big picture. IV Doxy is not a cureall when you've reached this point, and you need to address the whole picture. Am hoping your LLMD has advised you on all this.
I'd seriously wonder about the coinfections. Have you tried Flexeril for the muscle pain? Perhaps got an air mattress instead of coiled mattress that digs into your pain point? (And yes, this all worked for me and I have my life back finally.)
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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sutherngrl
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Member # 16270
posted
I agree! CFS and FM are descriptions of LD.
Have you treated Babesia? Many people don't get well because they have not sufficiently treated Babs.
I too have had fatigue as my most debilitating symptom. It started to improve after taking Malarone for babesia. Still have it, but not as severe. Still treating Lyme.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I have treated bart with Rifampin for 8 months and babs with Malarone.
I am on low dose cortef for my adrenal insufficiency and levoxyl and cytomel for my thyroid.
All other symptoms are gone except the chronic fatigue. I guess I don't understand why after all this time on abx it hasn't touched the fatigue. Some days it is worse than others but is Always present.
The calf pain is not bad..something that comes and goes. I can live with it. The fatigue/exhaustion is another matter...
I see my LLMD next week so hopefully he will have some ideas although last time we spoke he seemed kind of mystified as to why I can't get well.
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
I also wanted to add that I am doing detox for heavy metals too.
I am on all kinds of supplements including siberian ginseng-Acetyl L Carnitine-Magnesium-CoQ10 and a bunch of others the doctor has me taking.
I am doing everything the doctor has wanted me to do but it doesn't seem to work. This fatigue has been ruling my life for 4+ years and I am getting totally hopless.
Thanks for your replies..
Posts: 343 | From North Carolina | Registered: Oct 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I agree....The CFS symptoms had to have a CAUSE...like a borrelia infection, or bart or babs or other...don't settle on a label without finding it's cause.
Make sure all coinfections have been addressed thoroughly. I read that if a person is not getting better, they most likely have undiagnosed or untreated coinfections.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
I see Dr. H in NY who has been treating me for the past year.
I was only taking one Malarone a day so am wondering if that was enough. I am now on Enula for Babs.
I was on Rifampin for 4 months and then for 3 months. Before that on Levaquin for 2 months before I got tendon pain.
I get my hopes up when I start a new routine only to have the fatigue constantly here. I think we will have to talk about co-infections again. Maybe they were not treated long enough.
When I read the description of CFS fatigue it describes what I feel perfectly. Maybe that is why I am questioning it. Plus the fact that none of the abx have been able to relieve it.
It is just so confusing...
Posts: 343 | From North Carolina | Registered: Oct 2008
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lymeinhell
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Member # 4622
posted
What about supplements? Do you take anything? Diet - are you on low carb diet? Have you treated for yeast?
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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bettyg
Unregistered
posted
kim,
i was MISDIAGNOSED for 34.5 years by 40-50 drs. giving me every diagnosis/symptoms along the lines.
1st given were mono/epstein barr virus, CHRONIC FATIGUE for 25 plus years, later fibro, and then all the others in between!
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emla999/Lyme
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Member # 12606
posted
Kim812,
Have you been tested for chronic viral infections?
Chronic viral infections such as HHV-6, EBV, enteroviruses, parvovirus B19, etc. can cause debilitating fatigue and CFS.
posted
emla999- I was tested for a whole bunch of virus's by Dr. H in Nov 2007. They took about 14 vials of blood.
Some of them were HHV-6, CMV, EBV, HSV1 and 2, IgG subclasses, RAF, RMSF, and just a whole list of others over $ 3,000 worth.
I will ask about the others next week when I see the doctor. Thank you so much for those links. I printed them out.
I am seeing a doc here in NH who is co-treating me with Dr. H. I am going to ask him about the other tests I should have done.
Before I decide to quit abx I want to be certain everything has been looked into because there has to be something missing here especially when the abx can't touch the fatigue.
Posts: 343 | From North Carolina | Registered: Oct 2008
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Also test for enterovirus. The new website will be up and running in early March.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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adamm
Unregistered
posted
YEah--could be from an organism not hit that hard by Lyme drugs, like Babs or Bart. CAndida's also a possibility.
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Kim, check your RT3 levels in relation to T3 levels. Google Wilson's Syndrome. Is your temp OK?
I'm very similar to you as fatigue is my central issue (although I seem to have a dysfunctional endocrine system as well).
I just started cortef 4 weeks ago @ 20 mgs per day. I'm also on Armour thyroid at 2 grams/day.
I'm trying to arrange for a T3 only protocol as I feel it may be worth a shot. It's good to cross all possible causes off the master list.
Let me know how you respond to the cortisol.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
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posted
I would say that it still could be lyme....or a coinfection, or a combo.
Just keep trying different meds until something works, that is my opinion and 2 cents....something is bound to work but sometimes it takes experimentation to find what. Don't stay on the same thing for too long if it's not helping you.
But follow your intuition on what you think is causing this.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Thank you everyone! You have all given me great ideas to look into with my doc next week.
I have clinical hypothyroidism and extremely low cortef levels except normal at night. Doc said it is caused by the bacteria messing with the endocrine system.
I am on cytomel for T3 and levoxyl for T4. The cortef did help with the exhaustion I had. I feel as though I have two types of fatigue at times exhaustion and then just plain fatigue which really doesn't describe it.
I am currently on my second round of Rocephin IV and zithro/plaq and enula.
My feeling tells me this is a co-infection still. But everyday I seem to change my mind and think it is just chronic fatigue and I will have to live with it.
I truly do appreciate you all that have provided me with some great ideas. I am not giving up..at least not today.
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
I was wondering that myself. I was told I had CFS in 1988 and Lyme almost 4 years ago.
I have many health issues, but my worst is exercise intolerence. After almost 4 years of Lyme treatment I'm still in a wheelchair.
I did test positive to Bart this last spring, but I can't tolerate any of the meds used to treat it.
I think I'm still missing something! Unless it's Bart. But since I can't tolerate any of the meds to get rid of it, I'm stuck unless something else to treat it comes available.
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Kim - One Malarone a day is NOT enough! I weigh about a hundred and five pounds and I was on four a day plus 600 mg of zith to prevent resistance.
After two months on this combo I bumped up to 6 malarone tabs a day.
In my humble opinion, one would not do much of anything and I think that's probably where your fatigue is coming from, especially if all your viral titers came back negative.
Why did he have you on such a low dose? Was there a specific reason?
A lesson I had to learn the hard way was that Lyme ain't going nowhere until babs is eradicated from the body.
Please check into this!
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
I wondered about the low dose of Malarone. I weigh about 125 at 5'6". I don't know why I was only on one a day. I will put that in my notes too and ask about it.
I am not even on it anymore, he took me off last month. It has been extremely frustrating to be treating for so long with minimal results.
I see Dr. H in NY who is suppose to be one of the best so I don't know...
In fact I had the co-infection testing done again in Oct. and had a elevated babs titer and they thought maybe I had been re-infected but I think it just showed up because I had been treating it.
Two of my first symptoms were night sweats and flu symptoms. Gosh I just don't know what to think anymore.
I do believe in CFS but something has got to be causing the fatigue and I am trying to find out what that is so I can move on.
Posts: 343 | From North Carolina | Registered: Oct 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
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posted
I think it's very possible that anti-microbals could still be the answer for solving your fatigue.
Maybe you just didn't try the right dosages, etc. Could have been not enough, OR, could have been trying to do too much at once, and you weren't able to detox so you never felt better.
Like I said, follow your intuition....if you think more Lyme/co treatment would just make the problem worse, follow that intuition.....
....but I have really bad chronic fatigue, and I have tried the hormone thing, the virus thing, etc....and it has all lead me to believe that this fatigue for me is definitely the Tick Born Diseases. When I treat my TBD's properly by hitting them hard, then go off those meds onto something "maintenence" (like high dose Amox for me) I usually feel a little better.
I don't detox well, so I'll never be one of those people that feels great on the antibiotics, but I have come to believe that it really is the TBD's that are making me tired. That is my two cents, as I mentioned. I just don't want you to give up, even though you have tried a lot of things, as I can see.
I'm sure there are other combo's you can try, or maybe you used incorrect dosages, etc.
Yes, I recently also had an elevated babesia titer...the titer was taken during babesia treatment, and I think it came out because I was treating babesia.
Have you done pulsed artemsinin? I herxed a lot on it at first, but after that, I actually felt less fatigued when I was taking it.
What about Mepron with Biaxin and Plaquenil (to super power the Biaxin) and artemisinin and maybe Bicillin too if you can handle it? And then later on use some Flagyl.
Or there is something called the Gasser protocol, which is Bactrim DS with Roxithromycin (you would have to order this from overseas).
If you don't detox well, you will need to maybe add some IV glutathione, along with maybe some lymph massage, etc. (see if your insurance covers chiropractors, and maybe they offer massage from their office...that is how mine is being partially covered).
B-12 shots too...have you done those? Those help detox....but research the diff between methyl and the others, because I think the type of B-12 you get can matter.
Another thing to consider is sea salt and vitamin C. Lots of it. This can be dangerous though....read up on it. It helped my fatigue.
Or you may want to supplement with electrolytes. I use something called ElectroMix.
I hope some of those ideas help....I deal with horrendous chronic fatigue too (have tested positive also for lyme/bart/babesia), and I am just trying to brainstorm for you.
Best of luck.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
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posted
After looking at your list of drugs, some other things you could look into are clindamycin as an antibiotic for lyme, or as part of a babesia protocol. (you could try it with quinine also for babesia).
Also, maybe look in to taking either minocycline or tetracycline on it's own, and see how you feel....some people have reported feeling good on just one of those. I can't feel good on minocycline unless I take it alone. That could be something you take when you are "between treatments" or giving yourself time to detox ....just a thought.....of course check with your doctor, because maybe it's a bad idea.
If I think of anything else I'll let you know. I think us fatigue people need to stick together and report back on what helps us, because the CFS-like presentation is truly debilitating, in my opinion. I suffer with it too.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Yeah the fatigue is an extremely complex issue when you consider that only a small percentage of those with CFS (whatever that is)fully recover.
Hoosiers is right though. People should discuss methods that have worked for them. Personally, none of the lyme abx have worked for me yet and I have not been shown to have susceptible HLA types. The mystery continues.
I think of it as safe-mode. For whatever reason, my body is not ready to kick it into drive yet. This could very well be the body's way of preventing additional infections.
But who knows what other pathogens are flying under the radar and keeping us tired? Makes you wonder...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Hoosiers51-I am very appreciative of the time you took to post that reply. Sometimes it is hard for me to go on the computer and type but I am doing ok today.
I forgot to list that I have done Bicillin injections for almost 4 months last summer. I also tried minocycline which I also forgot to list. I have done IV glutathione but only for about a month. I also did the B-12 shots last year. I have never been on flagyl or artemsinin so those are things to consider. I am compiling my notebook to bring with me to NY next week with all these thoughts and ideas.
I am so sorry you are also dealing with the chronic fatigue. My former pcp said I was lucky I didn't have chronic pain but I said what I have is just as debilitating.
I have been having an extremely hard time lately trying to deal with the disappointments of failed treatment. I think I thought going to Dr. H a miracle was going to happen.
I do feel it is time to try something else or look for other answers. You are right that maybe I wasn't on the correct doses especially for the co-infections.
I will keep in mind all the things you suggested. I have read about the sea salt/vit c combo. I have alot to discuss with the doc next week.
I feel fortunate that I found this forum and that everyone has taken the time to respond to my post.
Thanks again and I will keep you posted on my next plan. My appt. is next Wednesday.
Lymeorsomething-I love that name..I think when I was diagnosed with CFS I didn't want to accept it because I knew there was very limited treatment. I honestly thought when I was diagnosed with Lyme and co's I would be magically cured. I had no idea what I was in for.
The constant chronic fatigue never goes away..somedays it is worse than others but very debilitating. I am willing to do any treatment but the disappointments are becoming very hard to take...
Posts: 343 | From North Carolina | Registered: Oct 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
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posted
Kim, how long have you been on the cortef?
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Hoosiers51
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Member # 15759
posted
No problem....honestly I just want to do anything I can to help out. The ideas I had might not lead anywhere, but you never know, so that's why I list them.
I should also mention (not sure if I emphasized this before) that I used to be VERY VERY disabled by this illness, and now I'm only sort of disabled by it. So there is hope with treatment. I have gained a decent chunck of my life back, just not as much as I want yet. Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
I have been on the cortef since October 2006. I am on 15 mg taken at 7am-10am-1pm. I just had my cortisol levels check last fall again and they are still at the very low normal range even on the cortef.
It definately helped with the terrible exhaustion I had. The doctor said I was very close to total adrenal failure back in 2006.
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
Hoosiers-The fatigue is not as bad as in the beginning of the illness I think because alot of it had to do with the adrenal insufficiency.
I guess my main problem is that the fatigue is still a huge problem in my daily living. I can't make plans or bascially do anything in the afternoons. I haven't gone out to dinner in forever because I am too tired at night.
With all the treatment I have been on I was expecting some improvement in that. And the fact that it just makes me feel terrible. No matter how much I rest during the day it does not restore me at all. I can lay down for hours and still feel terrible when I get up. I never fall asleep during the day.
I can't complain too much because I know there are others worse off than I am. My main concern is the treatment and why it hasn't really helped if Lyme and co's are the problem. Thank you again..for your suggestions and ideas.
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
Have you had your metals checked recently? Does Dr. H think metals are a main issue for you?
I've been treating over a year with many of the same meds, same Dr. and it wasn't until my metals were down to a safe level that my fatigue lifted some.
I'm still fatigued but nowhere near what I use to be.
Also candida/yeast fatigued me.
I also only did 1 Malarone per day for 10 months or so.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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posted
I had the metal testing done a year ago and am doing detox right now. I couldn't tolerate the DMSA so they have me on another protocol.
I did have high lead-mercury-aluminum and bismuth.
This is my second round of Rocephin and it isn't working so hopefully since I have a Picc in they will try another IV abx.
Even if I had a few hours in the day when I wasn't so tired I would be grateful but I haven't gotten to that point yet.
Posts: 343 | From North Carolina | Registered: Oct 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Not sure if I mentioned this earlier, but taking megadoses of Wobenzym is helpful for my fatigue. Today I took 15 pills twice. It's safe as far as I know, but you might want to look more into it to be sure.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
Can starting olive leaf extract cause the viral symptoms to kick up?
I just started taking 300 mg twice a day and feel so much worse.
It has colostum in it too and thought that would give me energy, but feel heavy and out of breath.
Posts: 1302 | From USA | Registered: Dec 2002
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I know that this is not a popular thing to say here on Lymenet, but CFIDS does exist. I know because I have it AND Lyme (and MCS and babesia and fibro).
It's true that a lot of people with Lyme are misdx w/CFS or fibro. And, some doctors now, after eons of not dxing CFIDS, are going overboard in the other direction: overdxing CFIDS (not following CDC dx criteria).
This doesn't mean these illnesses don't exist.
I remember the IDS who told me, "You have every symptom of CFS, but I'm not going to dx you with it bec there's no tx."
That was maddening bec 1. she was wrong (there are tx, just no cure), and 2. if u decide an elephant is not sitting on u, does the elephant cease to exist?
I've had CFIDS since 1995. I've had Lyme/co since 2007. There are differences in the symptoms and patterns and "feel" of the illnesses.
If you haven't been to the CFIDS Assoc. of America site, I recommend that. cfids.org
If you want to PM me, we can compare and contrast your sx and history.
I'm not a doctor, but I've been in the CFIDS community for 13 yrs and was a disability information and referral specialist in my former life.
I know other ppl w/CFIDS who *also* have Lyme.
This might be useful:
Most ppl w/CFIDS or fibro (who really have CFIDS or fibro, not misdx ppl) can remember a triggering event/insult to the immune system:
- viral (flu, mono, hepatitis)
- environmental (pesticide, carbon monoxide, new carpeting)
- physical injury (car accident, serious fall)
- or combination (surgery = physical trauma and chemical exposure of anesthesia, or an assault = physical and emotional trauma)
In many cases, for example, two people (lovers, parent & child, coworkers) get sick with the same bug. One gets better, the other doesn't.
IMO, CFIDS is simply the name for a certain cluster of symptoms that indicate that instead of the body recovering as it should have, it goes out of whack in specific ways.
I got CFIDS as a result of multiple small chemical exposures followed by 3 large, chronic exposures. No ticks involved. Just paint, carbon monoxide from a leaking gas stove/furnace, and cheap new pine furniture outgassing chemicals (like fungicide, pesticide, formaldehyde, etc.).
Peace, Sharon
Posts: 223 | From Western Mass. | Registered: Nov 2008
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posted
Sharon- I sent you a PM but did want to add a couple other things.
One of my "strange" symptoms is that I can take my finger and run it down my chest/stomach or even back and it leaves behind a long bright red line. Almost like I just branded myself. It only lasts a few minutes but it very wierd. Also when I put lotion or even wash my face it stays bright red for a few minutes. I can even draw initials on my chest and they appear. Just thought that was another symptom to mention. Doc says it is inflammation going on in my body.
Kim
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
Chronic Fatigue Syndrome and Fibromyagia exist, however they are always symptoms of something else.
It is unfortunate how they have been made "catch-all-we-don't-know-what's-wrong-with-you" diagnoses. There's no diagnosis out there called "Angina" that is just left as that - "Well you have chest pain. You just have it". No, people go to find the cause of said chest pain.
CFS and Fibro are ALWAYS caused by something. It is not always Lyme, but it is always something. And those causes, be they viral, bacterial, chemical etc.. can be treated if you find someone willing to do it. I do agree though that every single CFS/Fibro patient should have comprehensive Lyme tests, along with viral titers for herpetic viruses as these seem to be the most common causes.
Posts: 691 | From East coast, USA | Registered: Jun 2006
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posted
I had a positive Lyme test but I think I have something other then just Lyme. I know the day I got sick, April 16, 1988, I woke up with the worst flu I'd ever had.
Doctors thought it was viral menengitis. How many people with Lyme know the exact day they got sick?
I'm not saying I don't have Lyme, I'm saying I think there is something else too.
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
I do agree that something causes the CFS and Fibro symptoms. I guess my problem is that I have been taking abx for 2 straight years with little relief so I am thinking it isn't Lyme at all. I don't know...
My only symptom is chronic debilitating fatigue which has been my major symptom always. I just want to be sure I am not chasing after the wrong cause when I could be looking at something else.
I have had other symptoms come and go but the unrefreshing sleep and fatigue are chronic. It is very frustrating not knowing what is the right thing to do. I am taking abx break as of now and see what happens.
I have had every viral test you can imagine and nothing showed up.
I remember the day I became sick too. I have a great doctor here in NH and hopefully he will help me sort things out .
Posts: 343 | From North Carolina | Registered: Oct 2008
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Bottom line is you have something! Most probable is an infection. Think about it, that CFS is nothing but a description of symptoms, just like Fibro......they are symptoms with supposedly NO known cause. They love this because it makes their job easier. They don't have to find a cause, it is what it is to them. Just like I have MGUS and I could have accepted that untill the hematologist said the leading theory as to wehat causes MGUS, Fibro, MS etc is infection! Many mainstream docs told me this but all said, we just don't have the technology to find the root infection. Easy way out.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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I will reply to your PM, but given what you said above and in ur PM, I'm continuing to lean away from CFIDS (will PM re: that) and toward MCS and/or bart, etc.
The thing with skin hypersensitivity sounds *very* MCS-ish.
I have that, too.
And during an exposure, my face turns bright red (like a tomato), and feels hot.
My guess is you are masking and unaware of exposures.
I don't think the elevated titers shd be ignored, though.
For example, you could have MCS and also bart, but the antibx are putting you in a constant state of reactivity bec most MCSers can't tolerate meds, therefore fatigue all the time.
Do you have rosacea? (Roseacea?) I can't spell today. Google it if you don't know, and let me know after I PM.
-Sharon
Posts: 223 | From Western Mass. | Registered: Nov 2008
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posted
I agree that I have some type of infection that hit very quickly. My problem again is that after 2 years of abx nothing seems to be able to get rid of the fatigue. The other people on this forum that have the debilitating Lyme fatigue know what I am talking about.
Four years is a long time to have it with minimal relief. So at this point I just want to find out what it is. I still think there is a illness like CFS or Fibro caused by some type of virus or infection.
If it was some other bacterial infection other than lyme then it certainly should have been destroyed by now and that is why I am leaning towards viral or other causes. I will continue my search cause I have already lost enough of my life to this..never mind the fact that it is a huge challenge to get through each day and that just isn't acceptable.
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
I take Lunesta and melantonin for sleep. I am going through a really good sleep period. I still wake up unrefreshed though but at least I am not waking up all night long. Thanks!
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
in reading this thread orginally b/c of info i am looking up for mother, but kim the red streaking on the skin......i have this and have wondered about it.
platlets are ok, no issues with bleeding or clotting times/factors. but, if i run my finger across my chest there will be a red mark, and look like bruise, busted capillaries. then its gone. is very odd symptom i thought. have never thought to ask LLMD, there are usually much larger issues.
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Kim, I had mono over two years ago and have never been the same. However, I also tested positive for lyme twice since then. It is very possible you have competing issues. Abx haven't done too much for me yet either but I haven't been on them as long and as consistently as you. Have you tried anti-virals?
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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