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Another 17 year CFSer diagnosed with Lyme

Discussion in 'Lyme Disease and Co-Infections' started by loayachil, Jan 23, 2013.

  1. loayachil

    loayachil

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    Finally, a diagnosis and treatment plan (I hope). Or at least something to do.

    First of all, I want to thank all you guys, as I found this idea of getting retested for lyme (beyond the simple test that I took years ago) as well as the lab and then going to an llmd came from you. As I've mentioned in the past, you are my doctors.

    I know a lot of people have commented that if someone gets a diagnosis of lyme then they do not have cfs. And some have commented that maybe cfs is really undiagnosed lyme, which gives me to think, why have so many of us not been tested with a more reliable test for lyme.

    But, what I meant to say is that I think it is irrelevant whether cfs for some is a misdiagnosis for lyme, or whether lyme is a co-infection of cfs, or whether one caused the other. I am under the assumption that CFS is a multi-system crash, where something, a bacteria, a virus, a mold/toxin, stress, etc causes a system to start going into "safety mode" where it only activates itself partly, causing other systems to domino in affect. This may be why there are so many commonalities while there are also so many differences and different cures. For each individual they need to find that initial cause (causes) that triggered the systems from collapsing, which is why many of the popular treatments help maybe 10% of cfsers each. However, as the systems are collapsing together, this could be the reason why there is such a broad similarity to everyone's symptoms. If this is true, then CFS would be the term for the multi-system collapse caused by a host of different initial diseases or triggers. (This would answer the same/subsets/waste-basket question). This would also explain why we are in such excruciating pain and disability, yet for the most part the extra morbidity rate is non-existent. As such, whether lyme was the initial trigger to start the systems crashing (which might have been in my case) or mold or viral, etc, I think the end result for all of us is relatively the same.

    I have a second thought which I think is worth looking into in each individual searching for the cure. I think that besides for the initial trigger, there is a secondary large component that does not allow for us to attack the initial component. Therefore, when we address the initial component, the secondary one does not allow us to eradicate it, and when we remove the secondary component, it gets rebuilt from the main trigger. (I know this is what Rich was arguing for with his methylation protocol). Many doctors propose trying one protocol and approach at a time, which I think is a mistake, as protocol A might inhibit the secondary large problem, while protocol B might inhibit the initial trigger. Each one alone may cause temporary ups, but will never completely remove the CFS, and as soon as the protocol is switched, one main aspect will rebuild the second. (ie, let's say (completely hypothetically) there is a b12 and other vitamin deficiency which was initially triggered by a virus. Trying to deal with the virus with anti-virals will never work, as the vitamin deficiency will not allow it to fully eradicate it. However, as the virus is being fought off, the cfser will start to feel better, but never fully. When he switches his protocol to fix the vitamin deficiency, it will wane causing the cfser to start to feel better, but the virus will still be there constantly offsetting and causing the nutrients to never fully absorb and accomplish what it is supposed to. The same could be said about a bacteria and the toxins or biofilms that it creates, that other members are mentioning).
    In short, it may be better to either mix protocols together, or try some type of spiral approach, where you try the main attack on one approach, and add to it another, and then a third (while only keeping a minimum of the first) and then retry the first with a secondary approach, around in circles. (For example, try a strong regiment of antiviral, and then the main anti-mold protocol, and then switch to a vitamin deficiency protocol (lowering the antiviral protocol to a minimum) and then going back to an anti-viral regiment 2 (lowering the anti-mold to a minimum) then trying anti-mold regiment-2 (lowering the deficiency) and then a different deficiancy protocol, etc. This might fix the ouroboros cycle and fix the system permanently. (I should probably go into that in a different thread).

    In my situation, at April of my 16th year, I developed cognitive problems, and visual processing. I had gotten new glasses, and assumed that that was the cause. However, in June, I started having the sleep, headaches, base head heaviness, chest pain, eye pain, brain fog, oi, followed a few months later with the joint and calves pain. I think that it may have started as bacterial, and then as the body couldn't handle it (or it couldn't fight off the bacteria) either the bacteria took control, or the systems started collapsing.

    Sorry, I got excited that I could put my thoughts down semi-cohesively, that I went diverged, I will go into the lyme in the next post...
  2. loayachil

    loayachil

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    I had taken a basic lyme's test around ten years ago, which came up negative. I even asked my primary at the time about a secondary more precise test to which he waved his hand. I also once met an infectious disease doctor at dinner, whom I asked if it was possible that my cfs was caused by an infection. He told me that usually when there is an infection, the body wastes until it dies, and as for the most part I am stable (even with ups and downs) it would not fit into the disease mold.

    However, after so many here mentioned that they took a more specific test which returned positive and went onto anti-bacterial protocols and became much better, I took the Igenex panel which returned with:
    Lyme Immunoflourescence Assay of 80 (positive),
    Lyme igg Western Blot of 34 ind, 39+, 41+++, 58+ (Igenex positive, cdc negative) &
    Lyme igm of 39 ind and 41+.

    I know that there are false positives as well as false negatives, but considering the pain and neurological cognitive dysfunction, I think this makes enough sense to say that this may be the initial trigger. Also, I have gone onto various lyme forums, and they mention that although the cdc requires 5 bands, 39 is the band that is specific to lyme and if I have that I have lyme.

    So, based on other threads here, I ordered "Under our skin" and the "Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies". Hopefully I'll have the energy to read them.

    And I went to an llmd in NYC who (although not cheap) I thought was amazing. He gave me two and a half hours, listened, asked me specific questions, and gave me a specific regiment based on his clinical observations. Although my co-infection panel was negative, he told me that lyme should not give me the visual processing issues that I have, while Babesia would. He also told me that I probably have Bartonella (I forgot why, it could have been for the breathing, or maybe I'm mixing this up and the Babesia was for the breathing and Bartenolla for the visual). Based on kinesiology I have thyroid issues, and then ordered a special thyroid blood panel. (My thyroid panel in the past was negative, but he mentioned that there are many things that the base thyroid panel does not test, which he was testing now. Because of the negative, I had never gone to an endocrinologist).

    When he was discussing different approaches, he asked me which one I wanted, to which I told him I wanted the strongest one possible. He prescribed for me:
    Bicillin shots & Rifampin for antibiotics,
    2 gr of Armor Thyroid,
    a low sugar, low gluten, no alcohol diet,
    and a bunch of supplements (Acetyl-l-Carnitine for nervous system support, Artemisinin for the babesiosis, zinc, culturelle for gut, atp fuel, coq10, Transfer Factor LymPlus for immune support, and S-adenosyl – L –methionine for liver support).

    He also told me to try to go to a dry sauna to sweat. (Wherever I can find a cheap one)

    I have read around on the Healing Well lyme forum who in their introduction they mention taking detox baths (which I need to find one also).

    And meet him again in two months.

    What confuses me a drop (which I forgot to ask him) was that everyone always mentions doxy, which he did not mention, as well as the fact that he only gave me one antibiotic for the lyme + one for the bartonella. Everyone here mentions multiple antibiotics. Also, everyone mentions taking stuff to remove the biofilms. Should I add that, or wait for after the two months? (I also noticed that the Igenex did not test for Ehrlichiosis, and it was never mentioned. Should I call him back and ask?)

    I also asked him if I should try Rich's protocol at the same time and he told me to go for it. I received my labs from health diagnostics which showed:
    Glutathione (oxidised): .55
    Glutathione (reduced): 3
    S-Adenosylmethionine: 207
    S-Adenosylhomocysteine: 54.5
    THF: .54
    Folinic Acid: 8
    Folic Acid, active: 312 &
    Adenosine: 25.3

    Although none of these numbers are extreme, there still is a large number which are off, so I will also be starting Rich's simple Methylation protocol. (Thanks Rich).

    I have an appointment with the gi doctor (which I liked) next week, and will see if he wants to add anything. I also noticed that my diet is low on magnesium and potassium, and as these are often mentioned in this forums, I might add foods that include them.

    Thank you everyone, and I will share my journey. And encourage everyone else to reget tested for lyme at a more precise location.

    Thanks,
    Lo
    taniaaust1 likes this.
  3. Ema

    Ema Senior Member

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    My LLMD put me on three types of ABX - one to kill the spirochete (Ceftin), one to go after the cell-wall deficient form (azithromycin), and a cyst-buster. So you've got the bicillin injections to kill the spirochetes, Rifampin for Bart and possibly CWD Lyme...

    This isn't the most typical Lyme program I've ever seen but I don't think it is a bad one. There are as many different ways to attack Lyme as there are practitioners and a bit of trial and error is necessary to find the right combinations for you. If you like the doctor and trust him, I think you should go with the plan and consider asking for a cyst buster at your next visit.

    You could also try grapefruit seed extract which is a cyst buster that is available OTC. I started with that before changing over to Flagyl/Tindamax. My LLMD recommended that I take 250 mg of GSE twice a day and I felt like that worked pretty well.

    I like lumbrokinase for biofilms personally though I know some people use other things (serrapeptase, Rechts-Regulat etc). I also like lactoferrin either by itself or in bovine colostrum for biofilms and to help with iron levels. I think you would be fine to start this in a few months though. I started it after my initial herx was over and it definitely brought on another one!

    If you are taking thyroid, I would suggest having an adrenal saliva cortisol test done as well. If your adrenal function is compromised (and Lyme often does this), you may have a hard time tolerating thyroid meds until that function is supported as well.

    Anemia is another reason for trouble with thyroid meds so I would ask for a full iron panel including serum iron, TIBC/UIBC and ferritin. I would also consider splitting your thyroid dose AM/PM making sure to take it either sublingually or away from food which may hinder absorption.

    You may want stronger probiotics than just the Culturelle as well. I have been very happy with VSL #3 (except the price!) and I would also consider adding Saccharomyces boulardii. Just remember to take them as far away from the antibiotics as possible.

    Epsom salt baths work really well for detox baths and they are cheap!

    There's a lot to think about but it will all work out! Congrats on your new plan and best of luck with your treatment. Keep me posted!

    Ema
    taniaaust1 likes this.
  4. snowathlete

    snowathlete

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    Very interesting lo. Pleased you have found out and can now try treating it. I am getting properly tested now, as a patient of de meirleir. He is running several tests for other zoonotics too.
  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I see he/you used the word "usually" when there is an infection. I thought of Ebola as 1 of the most potent infections that leads to death. This statement from your Dr makes me curious as to how accurate it is? Seems exaggerated to me.

    GG
  6. taniaaust1

    taniaaust1 Senior Member

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    Glad you've found a new path to follow which could really help things for you. Im looking forward to reading your updates.
  7. Ema

    Ema Senior Member

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  8. peggy-sue

    peggy-sue

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    Please, be very cautious about using a sauna - even a dry one.
    I don't know if you suffer from temperature dysregulation, (I do) but many of us cannot handle extreme temperatures.
    And sweating will only dehydrate you - not a good idea in light of low blood volume etc. - you don't "sweat out toxins", that's a myth.

    But good luck - I really hope you get some improvement!:thumbsup:
  9. loayachil

    loayachil

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    Thank you very much Peggy Sue,

    I appreciate the warning as I probably would not have seen it elsewhere. However, by me it is the opposite. My feeling of cold or heat depends on how I've slept (or more on how I woke up). If I have slept well, I dont even notice the heat/cold (not sure if that's because of how I grew up or because the hypothalamus is skewed) and if I put my head down and wake up suddenly the termperature can be 10 degrees off, and I'll still be shivering/uncomfortable ??
    I bought a portable sauna, which (if it ever comes) I will set up in the kitchen, so I'm guessing I can drink if I need to.
    Concerning the sweating toxins, the lyme doctor told me about it, so I guess it's probably worth it. The toxins (assuming that it is lyme) is the dead spirochetes, so I'm half guessing that they are probably floating everywhere, and maybe different than other toxins.

    Thank you,
    Lo
  10. loayachil

    loayachil

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    Thank you Ema, your link was great. I have been reading a lot, but this was directly to the point and had more condensed useful info than anywhere else.
    Thanks,
    Lo
  11. Lotus97

    Lotus97 Senior Member

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    How much lactoferrin were you taking when it caused a herx? I'm trying to avoid anything that will cause herxing, but I was hoping to take some lactoferrin for my immune system and also iron. I'm not really taking a lot of iron. Just what I get from spirulina, but from what I understand the lactoferrin binds to the iron so the pathogenic organisms can't feed off it. I'm not sure if I need iron or not. My HGB is only 0.7 points below normal so I don't think my doctor will have my ferritin tested. She's done a lot tests on me, but it seems like whenever I ask her about a test she doesn't seem to think it's necessary. Thanks.
  12. Ema

    Ema Senior Member

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    250 mg capsule, three times a day.

    It was a very mild herx for what it is worth...nothing like the antibiotics!

    An iron panel is pretty cheap if you order it yourself. I think around $25 through econolabs.com or the like. You get your blood drawn at Labcorp and they email you the test results.

    Ema
    Lotus97 likes this.

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