Pre-Lyme Treatment

I'm starting pre-treatment in a day or two, so I figured I'd blog about my progress so folks can see how things go if they're interested, and in case I have trouble remembering anything :p

So basically I was diagnosed with Lyme about a month ago, based on Elispot LTT results from infectolabs in Germany. Not a strong positive, but a positive nonetheless. I would've picked up the borrelia bacteria about 12 years ago when living in rural southern Oklahoma. I was bitten dozens of times during the two years I lived there, though never had the rash. But I did start getting some skin issues that were probably due to inflammation, as well as neurological issues: heat intolerance, no sweating, migraines.

Yersinia is also positive, more strongly so as well, possibly due to a nasty gut infection I had in 2008. I spent a night on the bathroom floor in agony with that one, followed by several weeks of pain any time I ate anything at all (or even when drinking water sometimes). Apparently that one can become chronic, especially if the host has plenty of iron for the Yersinia to much on - and my iron tends to be high.

My prostaglandin E2, soluble CD14, Il-8, MCP1, and perforin (NK cell activity) are all elevated. Nagalese, elastase, and lymphocytes are all normal. CD57 is at the very low end of the reference range and antioxidant capacity is abnormal (high). The most extreme results are the IL-8, which is 727 pg/mL (0 - 15) and the prostaglandin E2, which is 5.64 (0.10 - 2.81). I'm completely lacking bifidobacterium, which is very likely to be problematic. More details and discussion about my results are at http://forums.phoenixrising.me/inde...o-see-dr-de-meirleir.26132/page-4#post-432962

Regarding disability, I'm homebound and sometimes couchbound or bedbound. I'm currently bedbound, needing to lay down most of the day to prevent my heart rate from getting up to 100-110 while resting. But this is a bit of a fluke - I get these episodes, and they go away after a week or three. Doctor de Meirleir estimated my Karnofski score to be 50-60, and class IV on the AMA scale of disability based on the results of the exercise test. VO2max was 52% of normal at maximal effort. My anaerobic threshold was measured to be a heart rate of 130.

My typically level of activity would allow me to sit upright (with my feet up) on the couch all day, watching TV or using the internet. I can handle about 5 minutes of light activity at a time, such as cooking (no chopping or vigorous stirring), or a little tidying up. I can't vaccuum, or load/unload the dishwasher, or dust, or scrub anything. I was able to garden last year if I sat on my butt and didn't lean to reach stuff, for 5-15 minutes at a time. I don't know if I'll be able to do that again this year, as I have been slowly getting worse.

So basically I have a very low threshold for PEM, with a lot of OI issues, which are usually controlled pretty well with Yohimbe - well, I can sit up most of the day at least! I don't have psychiatric issues, etc, and am usually very even keeled.

My pre-treatment plan includes 2 months of:
Diet low in simple sugars
Creon 150, 1 per meal
VSL-3, 1 per evening
HydroxoB12 injection, twice per week
Lipospheric Vitamin C, 1 gram per day
Glucaplex, twice per day
4ME, 2cc per day
2 liters of water per day

I've ordered a one-month supply of the Vitamin C, Glucaplex (mushroom & yeast blend?), and 4ME from Kalidashop.com . It's free shipping here in the Netherlands since it's a local company, so I'll order month #2 separately, when I'm sure I can tolerate those things. The cost for the first month is 371 euros, mostly for the 4ME.

After a couple months of pre-treatment, treatment for the Lyme will consist of IV antibiotics following the ILADS criteria. It shouldn't be hard to set that up locally, according to Dr de Meirleir, though my GP is rather skeptical (about pretty much everything).

Aside from future lab results, I'll primarily be looking at my heart rate to assess how I'm reacting to things, as well as whatever symptoms pop up, or get worse. But basically my heart rate is a good indication of my ever-changing PEM threshold, and seems to best reflect how screwed up I am at any given time.

Comments

Hi Vale i'm glab you started a blog so we can follow your journey... can i ask you where did you buy the idroxo injection? i mean yoi go to the chemist and they prepare for you the predosed injection or how it work?
 
That's been a bit complicated. They only have low dose injections in the Netherlands, so the pharmacy is ordering it from Belgium. Should get it within a week.
 
Vale you that went to KDM, i was talking to another girl yesterday about a point: do you know why KDM sometimes give abx and other times samento, banderol and company? is there a logic behind?
 
@Joshi81 - I think it would depend very much on what they were diagnosed with, as well as how other test results are looking (inflammation, etc), stage of the illness, etc. Also with Lyme some people have a lot of trouble with certain antibiotics or all antibiotics, and other approaches have to be tried. But ultimately I think you would have to ask KDM.
 
Very curious to watch your journey unfold. A naturopath I was seeing about 6 years ago said I had lyme after doing some sort of urine test, but I never had the chance to follow up on it. It's on my list of stuff that if/when my current improvement platos, it might be the next thing to tackle.

Here's hoping it helps!
 
great to read your blogs and see your journey as I am right behind you. My first appt in May. I don't like the sound of doing intramuscular injections. I did MB12 sub cut daily for 18 months. It helped a lot at first, but then the good effects wore off and now for the past year I hav had extremely high B12 blood levels on testing.
Good luck with it all and I second using stomach fat for sub cut injections, arms are too tricky and not fat enough!
 
Good luck with your lyme treatment. This is a path I am also just starting to explore, so I am very interested to read your progress. Thanks for writing a blog about your experiences. I wish you all the best!
 
Intersting Valentijn. I became sick while living in Norman, OK in 2007. I'm seeing KDM in Reno and even though I didn't show a positive for borrelia from Red Labs, he diagnosed me with gram negative bacteria based on my test results. He didn't order the LLT for me from here. But he said I can order the test kit to have it done. I'll start abx soon, but have not heard about a pre-lyme treatment. Did KDM give that to you or did you research it yourself?
 
The pre-treatment was prescribed by KDM, though it probably varies from patient to patient depending on symptoms and lab results. For me it's B12 injections, digestive enzymes, pro-biotics, and 4ME (nexavir). Also liposomal Vitamin C and Glucaplex, but I don't tolerate those.
 

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