I've been reading these forums for a while but am just posting for the first time now. I thought I'd share my story and progress for those who are interested...
For seven years I've had CFS and have had many tests done, including the Lyme ELISA which was negative. But I recently found a doctor who ran a Lyme Western Blot, and I came up positive for IgM bands 23 and 39! It's possible that this is a false positive, given my high antibody titers to EBV and HHV-6, but it could also really be positive!
I tested negative for both Babesia (FISH test) and Bartonella (test from Galaxy Labs). So, despite the uncertainty about actually having Lyme, I decided to give antibiotics a try and will see my doctor tomorrow. I've already been taking the Byron White A-L Complex and A-Bart for a few months now, but I haven't really noticed any changes.
Even though I might really have Lyme, there seems to be a lot of other stuff going on as well. I'll post some of my relevant/abnormal test results here for those who are interested:
-Lyme Western Blot: Positive with IgM bands 23, 39. IgG negative. -HHV-6: Positive, high IgG antibody titers, 1:640 -EBV: Positive, high antibody titers -HSV-1: Positive -Fry labs test for FL1953 (protomyxzoa): Positive -NK cell function: 9 (range 8-170) -Vitamin D: 25-D at 17, 1,25-D at 51 -Saliva cortisol test: flat 'curve', low morning cortisol -Stool analysis: low beneficial beneficial bacteria, opportunistic bacterial infection -Spectracell micronutrient analysis: deficiencies in serine, asparagine, CoQ10, vitamin E, low total antioxidant function -Methylation pathways panel: severe glutathione depletion, oxidative stress, partial methylation block
As far as my symptoms go, during my bad days/weeks, I experience really bad brain fog, dizziness, fatigue, paresthesias, headaches, unrefreshing sleep, sore throat, muscle pain, panic/anxiety, depression, memory loss, irritability, heat/cold intolerance, visual disturbances, muscle spasms and twitching, heart palpitations, low blood pressure, etc. On good days, I'll 'just' have low energy, cognitive problems, and usually some depression and/or anxiety (etc). (Amazingly, I can think pretty clearly right now, which is why I'm finally posting after months of putting it off.)
So I guess Lyme might be responsible for everything (the symptoms and the various test results), but there's a good chance that it'll take more than just antibiotics to truly get well again. I mention this partly because it seems that many of you guys have been taking antibiotics for a long time and are still suffering from lots of symptoms. In these cases, it might be possible that the bacteria has actually been eradicated, but immune dysfunction remains.
Are any of you guys familiar with the work of Rich van Konynenburg? He's a researcher studying CFS and has found that people with CFS (and possibly post-Lyme) have glutathione depletion and what's called a partial methylation block. He wrote an article about the connection between CFS and Lyme- if you'd like to read it, it's called �Is There a Link between Lyme Disease and Chronic Fatigue Syndrome?� and can be found here: http://forums.phoenixrising.me/showthread.php?12927-Documents-by-Rich-Van-Konynenburg-Parts-1-7
I feel like fixing the methylation cycle could really be the missing link to finally getting better. I'd be interested if any of you have taken the Methylation Pathways Panel.. if so, let me know!
Anyway, I'm afraid I've written too much- sorry. I'll update with my progress if you guys are interested, and I'll probably end up posting with questions and/or complaints, especially once I start the antibiotics (eeeek)!
I'm glad to have finally joined this forum!
Cheers, Karina
Posts: 34 | From NYC | Registered: Mar 2012
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Yes, I've had the methylation genomic panel done from Dr. Yasko's lab. It showed some significant issues for me that explained things I have struggled with most all my life (things like sulfite sensitivity, insomnia, etc.). I believe Lyme makes the methylation issues a lot worse than they otherwise would be.
The difficulty for me is finding a doctor who is familiar with the methylation protocols and yet can find me the necessary supplements that do not contain what stirs up and aggravates my sulfite sensitivity, or do not contain things to which I'm very allergic.
I do belive methylation cycle blocks or partial blocks are something that must be dealt with in order for me to recover from Lyme/coinfections. YMMV.
I was under the impression that band 39 was very specific to Lyme... Also, I'm not sure those of us with methylation issues can sero-convert much from IgM to IgG...my Lyme IGeneX Western Blot IgM has lots of bands, but the IgG has very few bands.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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tickled1
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Yes, please keep us updated. I think methylation issues are huge with me and I'm just starting to scratch the surface on this with myself after years of coming here.
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
you can do MTHFR testing, and correct methylation with methyl B12 injections, l meting late, ie deplin or folapro and a BH4 supplement.
Posts: 532 | From Texas | Registered: Oct 2004
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
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I did not have any testing done for methylation or MTHFR but I started the revised methylation protocol 1 month ago.
I have not noticed any changes...no herx, no improvement so far.
I have been treating Lyme for 3 years.
It will take more than antibiotics to get better.
Hormonal dysfunction should be addressed. 2 weeks after starting bioidentical hormones, I was sleeping much better and the fatigue and brain fog resolved.
Diet changes have helped...no sugar, sugar substitutes, no high fructose corn syrup, no gluten, very little dairy.
Exercise has helped.
Decreasing exposure to toxins in many forms (in/on food, chemicals, mold, heavy metals, etc) is important.
Strengthening the immune system is important.
Over time, many things have gone wrong in our bodies due to a domino effect. It will take more than one thing to get us better.
You may have to address all the issues that you know are abnormal.
-------------------- 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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blinkie
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Member # 14470
posted
welcome! I was diagnosed with CFS too. Then lyme...now, after 4 years of mostly abx treatment, but lots of other things as well, I only have a remaining few symptoms and am 90% better.
Now, I have to work on clean-up and rebuilding and see where I'm at. Keep at it...it's a marathon but you can get well with a good LLMD.
Posts: 1104 | From N.California | Registered: Jan 2008
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Interesting about the seroconversion problem.. I hadn't thought of that. And yeah, my doctor even said that bands 23 and 39 were highly specific to Lyme, but then he said that the results could also be a false positive. I had the labs done at Quest, and it was written under my results:
"Caution must be used in supporting a diagnosis of B. burgdorferi infection when sera are Western blot IgM positive and Western Blot IgG negative after the initial 4 week period from onset. Because the likelihood of a false-positive test result is high for these individuals, a positive IgM test alone is not recommended for use in determining active disease in persons with illness of longer than one month."
Sigh.
tickled1, Yeah this might be the 'missing link' (or one of them)- good luck! I'll keep you updated too.
dal123, I haven't done MTHFR testing, I just did the Methylation pathways panel from the Health Diagnostics & Research Institute. I just started taking folate (as Metafolin) but haven't heard of BH4. Hmm...
Dekrator48, Thanks for your input.. I'm glad your fatigue and brain fog went away. How did you come across the hormone treatment? I mean, did you see an endocrinologist, or did your Lyme doc test for the problem and treat you?
Do you mean Rich's simplified methylation protocol? I've heard that the progress on that is pretty slow- maybe the only way to gauge progress is by repeating the Methylation pathways test every few months to see if the glutathione levels (etc) are normalizing.
Diet changes have helped me too.. I'm currently on a yeast-free, gluten-free, low dairy, low sugar, paleo-style diet.. lol. (Hard to explain that to friends..)
blinkie, Wow I'm happy that you're finally better.. awesome. Do you still experience brain fog/ cognitive problems, or did those go away?
Cheers, Karina
Posts: 34 | From NYC | Registered: Mar 2012
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tickled1
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Member # 14257
posted
Karina,
How much did the Methylation Pathways Panel by Health Diagnostics cost you?
I just had some very expensive testing done through Metametrix but am already thinking ahead as to how I can gauge progress/changes as there's no way I'd be able to afford repeat/regular testing through Metametrix.
Posts: 2541 | From Northeast | Registered: Jan 2008
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It was $295. That's pretty expensive I guess. There might be some other tests that I'm not aware of. If you want, Rich van Konynenburg hangs out on the CFS forums at
and if you post under "Detox: Methylation\B12\Glutathione\Chelation\...", I'm sure he would get back to you with some advice regarding methylation stuff.
By the way, what kind of tests did you do at Metamatrix? Were they useful?
k
Posts: 34 | From NYC | Registered: Mar 2012
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tickled1
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Thank you! The results I got from Metametrix were incredibly informative and useful. I got a freebie on the testing b/c I have a family member in the medical field who attended a seminar and received 1 free test for attending. The test was a combination of many of Metametrix' kits put together. Out of pocket it would have cost me $1000. It was a combo of their TRIAD Profile, GI effects and something else.
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
Wow, sweet. Imagine if insurance covered all of that. (A utopian fantasy, heh.)
I've been thinking of what kind of tests to run to gauge progress too. I'm thinking: the methylation panel, GI effects stool test, vitamin/mineral assessment, vitamin D, NK cell activity, maybe some others.
I'm meeting with my doctor later today and will ask him what he uses for benchmarking progress.. I'll update with any good info I get.
k
Posts: 34 | From NYC | Registered: Mar 2012
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tickled1
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posted
Thanks! Would love to hear it!
Had another IV glutathione today and am hoping this will help things start moving in the right direction. Crazy expensive though! May try Myers' Cocktail too. Need some support, not just killing the bugs and turning my body into a toxic waste dump!
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
Haha, yeah. Does IV glutathione help you? I haven't tried it yet and have a feeling that my doctor will bring it up today. Maybe I should try it.. have you had/heard of any negative effects?
Posts: 34 | From NYC | Registered: Mar 2012
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Dekrator48
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posted
vitamink,
My LLMD tested my hormones and prescribed the bioidentical hormones. He studied hormones and anti-aging along with Lyme.
Yes, it is Rich's revised simplified protocol that I am using. The old protocol had some different supplements and the new one has the HydroxyB12 Megadrops and Methylmate B.
I plan to just stick with it for awhile and see what happens.
-------------------- 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
Thanks, Dekrator48. I'll ask my doc about testing hormones.
Rich reviewed my methylation results and one of his comments was: "I think that the simplified methylation protocol will help you, with some modifications: I think you should use methy B12 instead of hydroxo B12, because your glutathione is so low that your cells will have difficulty making the conversion at a fast enough rate."
I don't know if this would be the case for you as well, since you don't have your results. Just a suggestion, though.
Posts: 34 | From NYC | Registered: Mar 2012
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posted
So I saw my doctor today. He looked over my methylation results and even read Rich van Konynenburg's analysis(!). He gave me a B12 injection (5mg) and is having me start his own version of a methylation protocol:
-B12 injections once every few days -Folinic acid 800mg -PhosSerine Complex (Phosphatidylserine) 100-300mg -Liposomal glutathione 400-800mg
And on Monday I will be starting Doxycycline, 200mg per day. He says that this is just the 'first step', so perhaps he'll raise the Doxy dose later, or will add some other components. I'm also taking Rhodiola rosea for adrenal support, and magnesium chloride oil.
Tickled1, I asked about tests to measure progress. He said that the CD57 could be useful (so I'm going to get that done for the first time tomorrow). He also said that I should repeat the methylation panel at some point. I mentioned vitamin D and he muttered something that seemed like approval but I'm not sure Posts: 34 | From NYC | Registered: Mar 2012
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