Is Lyme Disease really just CFS?

[JT1024]

I had been tested years ago by the initial ELISA screening test and it was negative. When a number of people on antoher forum began testing positive, I decided to ask to be tested again. One of my doctors had me tested by IGenex Western blot IgG/IgM for Borrelia only. The cost was ~ $200-250 - out of pocket. He said I already fit the clinical diagnosis.

When that test came back positive on IgG but "negative" on IgM, he felt I needed to be tested for co-infections. That testing cost quite a bit more but it demonstrated that I had Babesia and Anaplasmosis. I had never been treated for any of these and I had all the symptoms. Many other things showed up as well - HHV-6, EBV, Mycoplasma, and Chlamydia.

I just learned of an LLMD in California, Dr. Stephen Harris. He has a chapter in the book Insights into Lyme Disease Treatments that you can read here : http://www.lymebook.com/steven-harris It has a lot of good information.

 

[JT1024]

Would love to have been at this: http://www.hopkinscme.edu/coursedetail.aspx/80029906

An Integrative Medicine Approach to Medically Unexplained Symptoms: Chronic Lyme, Chronic Fatigue, Fibromyalgia and IBS

November 10, 2012

 

[jeffrez]

Danced for hours? Doesn't sound like Lyme or CFS. ;-)

I saw the video of the talk by Dr Cheney and the part where he said that his "CFS and Lyme patients were similar / same" (can't remember his exact words")

Don't think they can be the same. Recent research has shown that CFS patients have unique proteins in cerebral spinal fluid that neither normals nor Lyme patients have. We obviously need better diagnostics, like maybe actually looking at the CSF. ;-)

 

[JT1024]

There have been studies indicated the difference between Lyme and CFS had been determined via proteomics.

There is so much new research going on today, it is impossible for everyone to keep up.

At least genomes, epigenetics, the ability to influence epigentics via diet, proteomes, microbiomes, etc. are rapidly being performed with new findings being reported daily.

I'm beginning to wonder if people with certain genetic predispositions, when exposed to toxins, trauma, infectious agents, have epigenetic changes resulting in the shift from Th1 to Th2.

So much to learn, so little time.

 

[Hip]

It is certainly interesting that ME/CFS is considered a Th2 dominant disease, but late stage Lyme disease is considered a Th1 dominant disease. So this is another difference between these two conditions.

This of course suggests that these two diseases may not be able to co-exist together that easily in the same person.

 

[Misfit Toy]

Yes, I danced for hours and now I am paying for it big time, but when I have a good moment...I live it! I am not the kind with CFS that sits still to have more energy. Which reminds me, I have done that...done nothing for days to have energy for some big event and then guess what? I can't sleep before said event and then I am sick as a dog anyway.

So, it's interesting Hip that you mention bells palsy. I have never had that. I don't have twitching muscles much either. I have the whole crazy insomnia nervous system though. Anyway, a girl I knew who had lyme could not close one eyelid. It wouldn't close. She had to tape a cotton ball to her eye to sleep and half her face was numb. Turns out, she has lyme. Diagnosed in 2009.

I do live in the MOST populated state of ticks. Pennsylvania. We have so much deer here that we are asked to hunt. No joke. And where I live is the worst. There is a park nearby that people have come down with major lyme because there are deer everywhere. I won't even go near it. People run there and hike and I think....."get in your car and go home!"

I would like to have a dog, but I am scared to have one for fear it will come in with a tick and I will develop lyme.

Who knows. I could have it. The reason I have thought it is a possibility is the fact that I have had horrible fibro pain. I don't have fluid or swollen joints though. The pain can be all day but is worse in the AM upon waking. I guess others have that too. Once I get up and move about, it lessens. It's not as bad. Usually by night time, it's pretty okay.

That shows you a lot. Morning=beyond low cortisol and I feel like death and nighttime= higher cortisol and less pain and feeling better mentally and mood wise.

 

[Undisclosed]

Danced for hours? Doesn't sound like Lyme or CFS. ;-)

Yes, I danced for hours and now I am paying for it big time, but when I have a good moment...I live it! I am not the kind with CFS that sits still to have more energy. Which reminds me, I have done that...done nothing for days to have energy for some big event and then guess what? I can't sleep before said event and then I am sick as a dog anyway.

So, it's interesting Hip that you mention bells palsy. I have never had that. I don't have twitching muscles much either. I have the whole crazy insomnia nervous system though. Anyway, a girl I knew who had lyme could not close one eyelid. It wouldn't close. She had to tape a cotton ball to her eye to sleep and half her face was numb. Turns out, she has lyme. Diagnosed in 2009.

I do live in the MOST populated state of ticks. Pennsylvania. We have so much deer here that we are asked to hunt. No joke. And where I live is the worst. There is a park nearby that people have come down with major lyme because there are deer everywhere. I won't even go near it. People run there and hike and I think....."get in your car and go home!"

I would like to have a dog, but I am scared to have one for fear it will come in with a tick and I will develop lyme.

Who knows. I could have it. The reason I have thought it is a possibility is the fact that I have had horrible fibro pain. I don't have fluid or swollen joints though. The pain can be all day but is worse in the AM upon waking. I guess others have that too. Once I get up and move about, it lessens. It's not as bad. Usually by night time, it's pretty okay.

That shows you a lot. Morning=beyond low cortisol and I feel like death and nighttime= higher cortisol and less pain and feeling better mentally and mood wise.

I am glad to hear that you 'live' your good moments. The difference between people with ME/CFS and those that are healthy is that we always pay dearly for our good moments (whatever they may be).

 

[Hip]

I do live in the MOST populated state of ticks. Pennsylvania. We have so much deer here that we are asked to hunt. No joke. And where I live is the worst. There is a park nearby that people have come down with major lyme because there are deer everywhere. I won't even go near it. People run there and hike and I think....."get in your car and go home!"

I would like to have a dog, but I am scared to have one for fear it will come in with a tick and I will develop lyme.

Seems that there are some precautions you can take to avoid getting tick bites, but I'd also be very wary and scared of these ticks if I lived there.

Given the dire misery of Lyme disease, I think all deer everywhere should be rounded up and sent to Siberia! Ever since I learnt that these animals are hosts for the Borrelia-carrying Ixodes tick, I don't see Bambi as being cute anymore!

Who knows. I could have it. The reason I have thought it is a possibility is the fact that I have had horrible fibro pain. I don't have fluid or swollen joints though. The pain can be all day but is worse in the AM upon waking. I guess others have that too. Once I get up and move about, it lessens. It's not as bad. Usually by night time, it's pretty okay.

One other characteristic Lyme symptom to consider, which occurs in around 1 in 10 Lyme patients, is a slow heart beat, and sometimes some heart disease, as Borrelia apparently occasionally damages the heart. So slow heart beat is another characteristic symtom that can indicate Lyme.

 

[Lala]

Most lymies do not have facial palsy, only few of them and many have joint pain without swelling. So this is really not a good criterion. There are strains which have more affinity to nerve system and strains that have more affinity to joints, so you can have totally different predominant symptoms than other patient has. So the only way to know is to try a therapeutic probe with antibiotic and see whether they have effect or not.

 

[Hip]

Most lymies do not have facial palsy, only few of them and many have joint pain without swelling. So this is really not a good criterion. There are strains which have more affinity to nerve system and strains that have more affinity to joints, so you can have totally different predominant symptoms than other patient has. So the only way to know is to try a therapeutic probe with antibiotic and see whether they have effect or not.

Empirical testing with antibiotics is another helpful diagnostic tool, though even here, it is not foolproof, as people with ME/CFS can also improve symptomatically with antibiotics, as antibiotics may help clear a gut dysbiosis in ME/CFS, or help clear co-infections with Chlamydia pneumoniae in ME/CFS.

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.

 

[Sushi]

...
One other characteristic Lyme symptom to consider, which occurs in around 1 in 10 Lyme patients, is a slow heart beat, and sometimes some heart disease, as Borrelia apparently occasionally damages the heart. So slow heart beat is another characteristic symtom that can indicate Lyme.

Hi Hip,

Do you know if this is true of Bartonella as well?

Sushi

 

[Misfit Toy]

Which anyibiotic would you start with? What is recommended?

 

[jeffrez]

Doxycycline, probably.

 

[Sushi]

It is often a "cocktail" of antibiotics, given in different phases of a few months. This is one tricky pathogen and a practitioner and/or patient has to be just as clever as the beast they are fighting.

Sushi

 

[Ema]

Doxycycline, probably.

Doxycycline is a great choice for many Lyme antibiotic programs. It does usually cause sun sensitivity though which makes it a less than ideal choice for summertime in those that like to be outside. My LLMD chose Ceftin, which is a cephalosporin, instead for me. Omnicef is another possibility in this category.

Usually you want to have an antibiotic to treat the spirochete form, one to treat the L-form (cell wall deficient) and one to treat the cystic form. There is some overlap though and some antibiotics are thought to affect more than one form. Generally no more than three antibiotics are taken at any one time and they may be pulsed and/or rotated to maximize the killing efficacy. The possibilities are almost endless which is why one should not stick with something that isn't working.

 

[snowathlete]

Did some more reading and there are a number of symptoms that may be more specific to Lyme - at least in comparison to ME/CFS. But would be interested to hear what others think, as some of these may not be that specific:

- Temporomandibular jaw problems (clicking, aching)
- Unexplained pain and swelling in teeth and gums.
- Muscle twitches, especially in the eye-lid (I know a lot of people with ME/CFS get twitches too, but I recently got it in my eyelid and what I read specifically mentioned that)
- Dry eyes
- Mildly elevated liver enzymes
- Heartbeat that makes your body shake
- Muscoskeletal injuries that take a long time to heal or do not heal well.
- Palpatory tenderness of the medial tibia shaft (this really interests me as I have this. I even had surgery on it in the end as my consultant thought it might be shin splints, or compartment syndrome, but that didn't make it any better).
- Alcohol intollerance (maybe not specific as I think its fairly common in ME/CFS as well to be fair)
- Worsening of symptoms after hot bath (I think maybe this is fairly common in ME/CFS too - IDK)

 

[Misfit Toy]

I feel okay after a hot bath. Ok, this is all good info. I am going to present this to my doc. I really don't know if I have lyme. no one does, but I need to talk about it anyway. I don't have PEM...which by the way, I don't even know what that is in CFS. I did the tilt table test and failed.

I am thinking about doing a round of doxy. My biggest concern is the yeast and what this could do to my gut. But, I think even just the doxy could help other things, too.

I can't take levaquin or amoxycylin, tetracycline. I can take Ceftin.

Guaranteed, my doc will not go for this. He is a HUGE CFS guy. He once had it. See how if you have something it forms your thoughts that you must have it?! But also, he is leery of too much abx use.

 

[Hip]

Hi Hip, Do you know if this is true of Bartonella as well

From a quick Google, I could not find any link to Bartonella causing a slow heart beat, so I think it may just be Borrelia that can do that; but Bartonella can cause heart damage.

Which antibiotic would you start with? What is recommended?

Doxycycline would seem to be an easy antibiotic empirical test to try initially for Lyme, as doxycycline is readily available, cheap, and generally well tolerated with few side effects. This published letter talks about a high dose of 400 mg doxycycline daily for Lyme, taken for 11 days:

"Because of its pharmacokinetic characteristics, doxycycline may be given at a dosage of 200 mg q12h or may be given as a single daily dose of 400 mg. Gastrointestinal upset is minimal if the tablet form of the formulation is used and taken with meals. CSF concentrations achieved with high doses of doxycycline are approximately twice those achieved with conventional dosing and are achieved more rapidly. There is no toxic liability associated with the high-dose doxycycline regimen."

Don't forget to take high amounts of probiotics after you finish to antibiotic course, to repopulate your gut with good bacteria.

 

[Ema]

Doxycycline would seem to be an easy antibiotic empirical test to try initially for Lyme, as doxycycline is readily available, cheap, and generally well tolerated with few side effects. This published letter talks about a high dose of 400 mg doxycycline daily for Lyme, taken for 11 days:

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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Kirk’s veterinarian prescribed a very high dose of doxycycline because of Buddy’s severe acute symptoms, and provided an initial supply of the drug, warning Kirk that there appeared to be an issue with acquiring the antibiotic, and that she should be ready to seek it at an outside pharmacy to continue the course.​

Two weeks later, when Kirk called her local Giant Eagle pharmacy, the pharmacist’s assistant looked up the cost of Buddy’s prescribed dose and told her “This can’t be right. It says $1,000.”​

After repeated checking, the pharmacy staff verified that the cost of Buddy’s prescription had skyrocketed to nearly $12 per pill, or $72 per day of treatment – for a staple generic drug that was so cheap 10 months earlier that they had been giving it away for free.​

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[valentinelynx]

I strongly recommend reading "Cure Unknown" by Pamela Weintraub. It explains the background behind the controversy over Lyme disease in a clear and rational way. She is a science writer of some renown, who, like me, was skeptical of the whole Lyme disease thing, but had to look into it when her whole family was affected. The "accepted science" on Lyme disease in the US is no better than that regarding CFS in the UK. Really strange situation.

In any case, 11 days of doxycycline will not begin to touch an infection with Borrelia. Even acute infections (say you just got bit by a tick today) require at least 2 weeks of treatment.