Is Lyme Disease really just CFS?

[Jarod]

Unfortunately, there seems to be a doxycycline shortage problem right now. I just tried to get some for my dog and was told it was basically unavailable or going to be terribly expensive.

This is possibly not a human problem if insurance covers it but still worth knowing about so options can be explored.

Here is an article describing the problem for vets:

http://www.whole-dog-journal.com/issues/16_5/features/doxycycline-shortage_20743-1.html

You can buy generic doxycycline online, but I have no idea if the quality is as good. There are at least three different generic manufacturers.

I think the CPNhelp.org site may be something people may want to check out if they are considering abx. They have good ideas for vitamins and have some good experience.

CPN can be tested for somewhat reliably also if the doc can interpret the tests correctly.

 

[Misfit Toy]

Jarod, I just looked at that site. I had mycoplasma pneumonia once.

One of the reasons I started thinking about Lyme is because a couple of weeks ago I was asleep and my left foot woke me up because it was in a Charlie horse. Out of nowhere this just happened while asleep. It took me awhile to get out of it and then my fibro pain skyrocketed. I get Charlie horses a lot in that foot, but never while asleep.

I feel like I have developed more pain and symptoms that are odd. I have a mucous like cough. Every winter, since 2009, I come down with a wicked infection that causes me to be super sick. For months.

There have been major changes that are just diagnosed as CFS. I just don't know anymore. I have MAJOR inflammation and I feel like I am not as intelligent as I once was. It takes me a bit to get many jokes. I can't always connect the dots.

Something just isn't right and the pain which was absent for years, is now taking over my life. I've developed insane allergies, my sleep is nuts and it all came on in 2009. I have said that its because I am going through the change, but what if I am wrong. Perimenopause doesn't cause Charlie horses in the left foot that can be daunting to deal with.

 

[Jarod]

The Spitfire

Ya that chlamydia is nasty stuff and can get everywhere.

I didn't know that cramping is one of the symptoms of lyme. I happen to have those occasionally too. Not necessarily sleeping though.

Potassium and magnesium can help deal with the leg crams and foot cramps.

I'm wondering if I started off with lyme disease back in the early 80's. Had a bull eyes rash at the time, but nobody knew anything back then. I don't have an opinion if lyme is the root cause or not.

Everything can pile on, so you may have more than one thing by now. There is just so many potential insults to ones' health to avoid. It is almost impossible not to get taken down sooner or later without a good detox system running.

One thing I'm sure about, is this crud is not going away. It's only possible to achieve remission through a combination of things including drugs and vitamins. Maybe it's possible to do it with just vitamins, but one can't be real sick and damaged to pull it off.

Hopefully your gut is in good shape, and you can pull out soon.

You might have an inflammation problem too by the looks of your head.

 

[Moxie]

Unfortunately, there seems to be a doxycycline shortage problem right now. I just tried to get some for my dog and was told it was basically unavailable or going to be terribly expensive.

This is possibly not a human problem if insurance covers it but still worth knowing about so options can be explored.

Here is an article describing the problem for vets:

http://www.whole-dog-journal.com/issues/16_5/features/doxycycline-shortage_20743-1.html

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Yes, it's awful. Apparently the last plant that was making it was destroyed in Hurricane Sandy and they have no plans to re-build. We're currently subbing minocycline in our practice. It's a great antibiotic, but not nearly as cheap as doxy used to be.

 

[Misfit Toy]

No,this thing isn't going away, nor will it. I have been sick too long and I have never had a remission. Never. I am too far down the hole. Again, not sure if I have Lyme and I know it didn't start as Lyme.

Yes, my head is a little swollen and inflamed. My eyes, too!

 

[GracieJ]

Have to admit I'm just a little bit tired of the latest "if you have CFS, it's really Lyme" routine, as if it were a proven thing. I have nothing against testing for it, of course, but we don't need to be twisted into another box, either.

Have to admit I'm really tired of "if you have CFS, it's really _____________________ " fill in the blank.

Always followed by "the answer," of course.

Really... just want to show researchers and others how much coping is involved with the syndrome. There is much to be managed, not oversimplified or hastily answered, or discounted over the long-term.

 

[Misfit Toy]

I understand Gracie. I feel the same way. An interesting factoid; I called my acupuncturist today and said, "It's been a week and I haven't received my herbs." Her response, "I am so sorry, I am having a hard time putting a formula together for you because I am just stumped." I went to her for irregular periods and perimeno. It's been a lifesaver with that. BUT, because I am not responding in a more favorable way with CFS...she is stumped. I have talked to her about this before and said, "I have had this for 24 years, I am not expecting a cure. I don't expect much from this." Well, her ego is so big, if you ask me, and the fact that she has lyme...and treats many with Lyme.

I don't know. I know this; I just want to get better like all of us on here. If I do have Lyme, or with my CFS, I am just so sick of this. I hate this life. I hate pain and not being able to travel...my dream.

There are illnesses out there that aren't cookie cutter. CFS is not the only one. Why do these "people" think that is the case? Life, and so much, is bigger than anything you learn in a book.

Go to the Amazon, there are more creatures there and unknown creatures. Things even the most knowledgable scientists have never seen or heard about in a book. Human beings make mistakes. We all know that on here. We deal with it all the time, unfortunately.

 

[cigana]

Further Considerations:

And the classic "bull's eye" pattern Erythema migrans rash occurs in about 75% of Lyme cases, so if you never observed any such rash on your body, then again this increases the odds against you having Lyme.

Lyme MD's do not consider the percentage to be this high, I've heard much lower quoted (eg. 30%). This page for example quotes 50%:

http://www.ilads.org/lyme_disease/about_lyme.html


One of the problems with Lyme is that, in its chronic form, it will infect people in different ways. Depending on personal genetics, it will reside in different parts of the body and hence cause different symptoms. I really don't think there is any such thing as "classic" chronic Lyme symptoms, though most of the "classic" symptoms quoted in this thread are more relevant to the acute form of the disease. There is just no way to distinguish chronic Lyme and CFS via symptoms.

They have exactly the same problems as us: post exertional fatigue, memory problems, cognitive difficulty, sleep disorders, gut problems, mitochondrial dysfunction, POTS, weak adrenals, multiple infections, immune dysfunction, sensitivity to supplements, etc. etc.

They just usually come in from a different perspective, because they remember getting a bite... whereas we don't, and so we think that Lyme is unlikely. Speaking for myself, I was surprised, as I live in a big city and did not ever spend much time in the country, that they found Borrelia in me.

Research into chronic Lyme is poorly funded...we don't know how prevalent it is or why it is that some people will get ill only years after being infected

Btw, if any of you haven't seen this video by a prominent Lyme MD, Richard Horowitz, it's well worth viewing (see the 2nd video down, about 24minutes in):

http://lookingatlyme.blogspot.co.uk/2012/05/lyme-disease-forum-ny-21-may-2012.html

 

[TrixieStix]

My Lyme MD explained that you can get sick many years after the initial infection, because Lyme can hibernate in the body.

I've been wondering about this. Seems if this is true then a person with ME/CFS could have Lyme come into play as a secondary issue which would mean saying Lyme excludes a ME/CFS dx is absolutely wrong. The waters start to get very muddy.

 

[TrixieStix]

I tested negative for Lyme until I was clinically diagnosed and treated with ABX, a few months after this I tested positive.

I've heard it said many times by Lyme MD's that some people just don't test positive until after they begin treatment, and that's what happened with me.

With what test did you test eventually test positive? Igenex? CDC ELISA/WB?

 

[TrixieStix]

Apparently facial palsy can occur in anything from 2% to 25% of Lyme patients, depending on the geographic region and the patient population studied. Ref: here.

Although many Lyme patients may not have facial palsy, and many may not have swelling with their joint pain, if you do happen to have either of these symptoms, then it will provide good evidence you Lyme rather than ME/CFS. So these symptoms are useful diagnostic criteria if you happen to have them.

Can this facial palsy just show up once for example during a bad flare of neuro symptoms after a stressful event? This is what happened to me last year. I had a 22 hr long episode of unilateral facial palsy during a week where I also had sudden onset of vision changes, lots of twitching of muscles around my eye,uncontrolled jerking of my head, arm, leg, aphasia, burning sensation in right side of my face and so on. These symptoms did eventually lessen after 1 months time.

 

[Butydoc]

The other day I went to my acupuncturist and she has lyme disease. For the most part, her herbs and treatment have really not done much. Because she is having a hard time with this thought, in her mind, I have Lyme disease.

I have been tested like crazy for Lyme. Igenex and all of the previous Western Blot tests over a 24 year period and they always come back negative. No co infection or anything. Absolutely 100% negative. I didn't start having pain until my 13th year of being ill. For years I had perfect cognitive ability.

I am so tired when I am not responding to something of people saying I have lyme, or all of my lyme friends thinking I have lyme. I have friends with Lyme who have been on ABX for 6 years and they are sicker than when they started.

I really don't want the diagnosis, which my lyme friend explained the other day can be based just on symptoms. I don't want any ABX.

Having said that, I am afraid I am missing something. I am not an in bed-housebound kind of CFS person. I work, get out, etc. I am not a high functioning person, but compared to many...I am out and about everyday. I also spend days in bed at times, but I can take care of myself. I drive, go to the store and last night I danced for hours at my friends. I usually do something everyday.

Anyway, not sure what to think and it scares me. Don't know what to believe anymore. Thoughts? Even if I was diagnosed, the thought of the runaround with ABX freaks me out.

I have heard twice in one week, "Chronic Fatigue Syndrome is really just Lyme disease." Seriously? It is? I thought Chronic Fatigue Syndrome was Chronic Fatigue Syndrome.

Hi Misfit Toy,

It isn't clear to me if chronic lymes and ME/CFS are different diseases. Maybe they start out differently but appear to me to follow the same symptom pathway. In the same way that certain viral infections, pregnancy, mental stress cr other triggers seems to end up with the same ultimate end, ME/CFS. Having followed this topic for many years on this forum, there certainly no convincing evidence that they are two separate chronic diseases.

Best,
Gary

 

[Misfit Toy]

Hi Misfit Toy,

It isn't clear to me if chronic lymes and ME/CFS are different diseases. Maybe they start out differently but appear to me to follow the same symptom pathway. In the same way that certain viral infections, pregnancy, mental stress cr other triggers seems to end up with the same ultimate end, ME/CFS. Having followed this topic for many years on this forum, there certainly no convincing evidence that they are two separate chronic diseases.

Best,
Gary

I don't know. I see many with lyme with way more neurological symptoms. But, who knows. I guess I am just tired of so many pushing Lyme onto anyone who has CFS. Honestly, I see so many with Lyme that are still so sick with abx. Lyme folks sometimes think it's better to be diagnosed with Lyme because it's a "real" diagnoses. Really? The treatments for it suck.

To me, in some ways...you are right. They are two diseases with the same outcome much of the time-DISABILITY.

 

[TrixieStix]

I don't know. I see many with lyme with way more neurological symptoms. But, who knows. I guess I am just tired of so many pushing Lyme onto anyone who has CFS. Honestly, I see so many with Lyme that are still so sick with abx. Lyme folks sometimes think it's better to be diagnosed with Lyme because it's a "real" diagnoses. Really? The treatments for it suck.

To me, in some ways...you are right. They are two diseases with the same outcome much of the time-DISABILITY.

Since my earlier comments I have gone down the Lyme information/research rabbit hole so to speak. I've now come out the other end agreeing with many of the criticisms of the CDC and IDSA. However I also see equally troubling attitudes on the other side of the debate. I've read many online threads where lay people are essentially diagnosing strangers over the internet and telling them things like... "having just 1 positive Lyme band means you do have Lyme disease and you need antibiotics". I don't think saying these things to strangers on the internet is ok no matter how bad IDSA may be. Seems like there are a number of Lyme folks who feel they are an authority on the matter and have the knowledge and qualifications of a doctor to diagnose strangers over the internet. Of course this is a small number of people, but still they seemed to come up quite often as I poked around. It makes me thankful that here on Phoenix Rising these types of comments are not allowed. It does no one any good.

The impression I get is that IDSA is likely wrong about many things (the motivation for this is a whole other discussion), but also those on the other side of the debate are likely wrong about many thing as well. The level of science and research needed just doesn't exist. So until then patients are doing the best they can to make the "right" decision regarding diagnosis and treatment. For some the mainstream Lyme testing and treatment guidelines have worked well for them, for some LLMD testing and treatment has worked well for them, and for others neither approach has helped and in some cases has caused them harm.

With my own recent Igenex testing I get the impression a LLMD would likely diagnose me with Lyme disease. Based on me having 7 positive IgM bands of which 3 are thought to be Lyme specific. My only IgG positive band is one that is very cross-reactive so I don't put much stock into it. I am aware of the debate surrounding Lyme and sero-conversion from IgM to IgG but making serious medical decisions based on debate is not quite my style. That said if anyone has any links to studies about Lyme seroconversion I'd love to read them. My mind is open! And of course a doctor who follows IDSA guidelines would say I definitely do not have Lyme disease.

My instincts are telling me that if my standard Quest Lyme Western Blot test that was done just a few days ago comes back negative I will feel confident that it's unlikely I have Lyme disease and that the 3 lyme specific positive IgM bands that came up on my Igenex test are false positives or perhaps they too have yet undiscovered potential for cross-reactivity. I also have no history of a known tick bite or EM although I do realize bites often go unnoticed and that many people never develop EM. The fact is I am hesitant to take antibiotics without very strong evidence they are critical to my health and/or will improve my health.

This Lyme thing is soooo stressful. So many voices out there telling you different things, saying one side doesn't know what their talking about, and the other side saying the same thing about them. I'm sure I am not the only one to find it a bit overwhelming.

I am in no way intending to come across as criticizing those who have differing views about Lyme, what constitutes evidence of Lyme infections, etc. We all have to make whatever decision we think best for ourselves and/or our loved ones based on what information we have and with the guidance of our doctors. I am definitely open to info anyone may have that they think I could benefit from.

 

[TrixieStix]

Research seems to suggest Lyme disease and ME/CFS are more different than they are alike.

http://simmaronresearch.com/2016/08...nic-fatigue-syndrome-mecfs-are-they-the-same/

 

[duncan]

Research seems to suggest Lyme disease and ME/CFS are more different than they are alike.

Maybe so, but this effort seems more confused about what it is or is not studying. Is it post Lyme disease? Post-treatment Lyme disease? Lyme disease? What is the difference between post-treatment Lyme disease and late stage Lyme disease refractory to treatment? Is PTLDS actually a thing, or just a label masquerading as a thing?

The study also seems to incorporate a large assumption, namely that it is not the infection that is causing symptoms. If this is the same Alison Rebman that I think works with Aucott, that should not be surprising.

Lyme disease by definition IS different from ME/CFS. The former is clearly a spirochetal infection.

 

[Markisoutside]

Chicken or egg? I received a clinical diagnosis of Lyme 6 years ago. I did 40some days of doxycycline and the symptoms went away. 2 years later I became ill again. Western medicine could not find a reason, I did a course of doxy and stayed sick. I followed Steven burners protocol for Lyme and symptoms went away. 2 years ago I strtrd getting sick again, brain fog, word drop, fatigue, etc. I tried herbal approaches with some success but the symptoms would just yo yo. I was still very physically active racing mountain bikes and Training heavily. At the same time I was under tremendous stress at work. Suddenly my world blew up. I couldn't think or handle stress or activity. I was diagnosed with cfs. When I received the diagnosis and told to take up golf, I literally cried. I didn't want this diagnosis.

It's been 8 months since then and I have been able to work,but that's about all. I have experienced much better quality of life after adopting a strict paleoautoimmune diet. But the truth is I have no idea what I have. So many symptoms seem to overlap. Did my Lyme cause my cfs? Do I still have Lyme? Do I have cfs? I live in a small town in northern Wisconsin with very few medical options. I don't even know where to start. I joined Phoenix rising 2 days ago. Any suggestions?

 

[frozenborderline]

i have similar questions, bumping thread

 

[Isaiah 58:11]

@debored13 I am no expert and have lately been dumber than a box of rocks, so this isn't worth a whole lot...

My opinion is that they are separate diseases but many people have both. I had an infectious onset and then 4-6 months later had a tick bite
(I didn't know what it was and it went untreated.) I have no idea if I had EM because the bite was on the back of my head. After that I clearly had a new set of symptoms, some of which resolved with antibiotics, others that had no change whatsoever, and some that relapsed to a new low every time antibiotics were given and then withdrawn.

I think Lyme must be like EBV: nearly everyone is exposed at some point and it only presents a threat when your immune system is crapped out. For example, my aunt gets hundreds (no exaggeration) of tick bites per year and is totally asymptomatic and has negative antibody tests. I, on the other hand, had positive IgM 10 years after the bite (I then switched to IgG with antibiotic treatment.) I do assume the infection is resolved, but I have facial twitches when I get crash-y; I think the damage from Lyme can be permanent and exacerbated by ME/CFS.

Edited to add: Antibiotics prescribed normally (Cipro and I don't remember what else for the usual 7-14 days) didn't switch me from IgM to IgG. I had rounds of various antibiotics for different things like UTIs and kidney infections after my tick bite but prior to my first Western Blot. After two Lyme tests with +IgM, I had been on multiple antibiotics (Augmentin, Biaxin, Minocycline, Rifampin, Metronidazole, Rocephin) for months when I saw that change in my lab work.

 

[frozenborderline]

@debored13 I am no expert and have lately been dumber than a box of rocks, so this isn't worth a whole lot...

My opinion is that they are separate diseases but many people have both. I had an infectious onset and then 4-6 months later had a tick bite
(I didn't know what it was and it went untreated.) I have no idea if I had EM because the bite was on the back of my head. After that I clearly had a new set of symptoms, some of which resolved with antibiotics, others that had no change whatsoever, and some that relapsed to a new low every time antibiotics were given and then withdrawn.

I think Lyme must be like EBV: nearly everyone is exposed at some point and it only presents a threat when your immune system is crapped out. For example, my aunt gets hundreds (no exaggeration) of tick bites per year and is totally asymptomatic and has negative antibody tests. I, on the other hand, had positive IgM 10 years after the bite (I then switched to IgG with antibiotic treatment.) I do assume the infection is resolved, but I have facial twitches when I get crash-y; I think the damage from Lyme can be permanent and exacerbated by ME/CFS.

Edited to add: Antibiotics prescribed normally (Cipro and I don't remember what else for the usual 7-14 days) didn't switch me from IgM to IgG. I had rounds of various antibiotics for different things like UTIs and kidney infections after my tick bite but prior to my first Western Blot. After two Lyme tests with +IgM, I had been on multiple antibiotics (Augmentin, Biaxin, Minocycline, Rifampin, Metronidazole, Rocephin) for months when I saw that change in my lab work.

i am considering going to an "LLMD" or trying the buhner herbal protocol, but... Idk it seems drastic especially if i don't have the benefit of a good test for the disease. i may get a spinal tap just to make sure