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Damn cats! Cats, Bartonella, XMRV and CFS

Discussion in 'Lyme Disease and Co-Infections' started by Fejal, Sep 24, 2010.

  1. Fejal

    Fejal *****

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    This evening I was doing some research to try to identify which bacteria has colonized my cells. I contracted XMRV, then mononucleosis, recovered from mono and have a low count for XMRV. On the BALI protocol I tested positive for having NF-kB and cIAP1, cIAP2 (table 1, Faherty C. Staying Alive. March 2008) immunological pathway impairment. According to Faherty the only bacteria known to both colonize monocytes and block these pathways is....bartonella sp. (similar to the one that causes cat scratch disease). Meow!

    This makes perfect sense. I've had numerous scratches and even a few bites previous, remember getting a papule, have generalized lymphadenopathy and the symptoms match mine:

    The same source also confirms that Bartonella is a good stealth bacteria:

    (Breitschwerdt, EB. Bartonella sp. Bacteremia in Patients with Neurological and
    Neurocognitive Dysfunction. JOURNAL OF CLINICAL MICROBIOLOGY, Sept. 2008, p. 2856–2861)

    I've asked my doctor to order a PCR blood test for Bartonella. I'll let you know what it finds!

    Does anyone else have exposure to cat scratches and bites that preceeded your CFS?
  2. ukxmrv

    ukxmrv Senior Member

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    I've been tested for cat diseases quite a few times in the past as I had cat exposure, including one animal that had a disease no VET could identify. That's why I've followed these discussions online and follow different tx's.

    No cat related diseases have ever been indentified in me. As yet. Bartonella have been well discussed on ME groups over the decades.

    XMRV+
  3. Fejal

    Fejal *****

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    Faherty says it goes L-form so this will be interesting. I don't think that's ever been considered.
  4. August59

    August59 Daughters High School Graduation

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    XMRV - Low Count?

    "This evening I was doing some research to try to identify which bacteria has colonized my cells. I contracted XMRV, then mononucleosis, recovered from mono and have a low count for XMRV"

    I thought XMRV was only "qualitative" in current testing, not "quantitative"?
  5. Fejal

    Fejal *****

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    I don't know. I think they Quality controlled mine and it was so low it was missed on the first pass. I've also read XMRV is low count in general, it only has a few resevoirs after the initial infection passes. But I didn't get to see the results.
  6. Fejal

    Fejal *****

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    I just recalled exactly how the disease was transmitted. While I was recovering from mononucleosis and XMRV fatigue a stray cat got into my apartment and seeded it with fleas. One night I woke up with bites all over my legs. I flea bombed but by then I had a papule. The fleas must have been carrying bartonella sp. Drat!
  7. Fejal

    Fejal *****

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    I had a follow up with my MD today. He said I made the mistake of forgetting to tell him about the flea bites during my first consult. That might have alerted him earlier (but I doubt it because this form isn't the classic "cat scratch fever" disease type it's one of 25 alternate species version known as bartonella spp. in the medical literature). Hard to be perfect with memory problems. Anyway, thank goodness the Faherty article reminded me of the fleas. Things are looking up. Interestingly, this might show the usefulness of the BALI protocol as a diagnostic tool. If it can pick up Bartonella that's pretty sensitive. Will report the bloods when they come back.
  8. Fejal

    Fejal *****

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    Found out the standard diagnostic test for Bartonella is only 20% sensitive so there is a large chance I will get a false negative. I'll have the initial answer Monday. If negative I have to have three daily blood samples taken because it has a variable expression cycle. Ouch.

    I spoke to an MD at the University of North Carolina Infectious Disease department. Sounded like the CDC. Automatically was skeptical of bartonella infection and tried to reject the diagnosis just because lab testing protocol may not be approved yet. Stated that he would be unwilling to do anything off label to treat it even if positive. Horrible center. I told him no thanks. UNC department website ironically states their mission is the opposite:

    For anyone interested the only lab that runs a good test for all the Bartonella subspecies is Galaxy Diagnostics.

    On the Bright side, my energy is stable at 25% recovery (up from about a starting point of 5%) after 1 month of BALI and having completed the Marshall Protocol phase 2. I didn't want to start MP phase 3 until I ruled out Bartonella sp because if it turns out to be that organism I prefer to target it specifically rather than use MPs shotgun approach which theorizes the unscientific theory that everyone is infected with everything. I theorize this should allow a faster recovery. Hopefully everyone on this forum is wrong about XMRV being so important to the longevity of the disease. I'm betting it's just one of many viral triggers which is logical because one study showed many patients have MLV virus but not XMRV.
  9. soxfan

    soxfan Senior Member

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    I just wanted to let you know that I was tested for Bartonella through IgeneX Labs. I came up with a slightly elevated titer of 1:80 where the normal is 1:40.

    I was treated with Rifampin for 8 months..not sure if I really had Bart as none of my symptoms went away with the treatment. I was tested again 1.5 years later and came up with a 1:40 titer which they said was indeterminate. I didn't treat again..
  10. Fejal

    Fejal *****

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    Ingenix? That's not good enough. The PCR is only diagnostic for the cat scratch bartonella so you likely were false negative.

    When you retested did you do the 3 day sample? The one day sample is wrong 80% of the time. It's possible your titer just read low due to the cycling of the bacteria. Visit the Galaxy link above for more info on the bacteria's lifecycle.

    Also, these bugs are L-forms so if you didn't restore the vitamin D receptor, PI3 and caspase3 immune pathways it's possible that the L-form might have stayed dormant inside your cells to reactivate later. I've been following the BALI protocol so my pathways are working. It will be interesting to see how the titers go but I can tell my energy is slowly returning, lymph nodes are getting smaller, and sore throat is less sore. I think it's working.

    If everything here was due to xmrv alone then I shouldn't be improving at all.
  11. Fejal

    Fejal *****

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    This rocks! I just determined two more signs of bartonella spp., streaky abdominal rash and axillary lymph nodes. That means I have it. Recovery here I come!
  12. pine108kell

    pine108kell Senior Member

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    I was tested for bartonella with Igenex at least 5 years ago and had the highest titer possible. I also tested positive for lyme. I probably have many infections. I've taken many antibiotics with only some improvement.
  13. Fejal

    Fejal *****

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    What did the doctor say was the reason you didn't respond? According to Faherty spirochetes go L-form so if you weren't using Marshall Protocol/BALI type lifestyle restrictions I imagine your immune system wouldn't have recovered enough to overcome it. Spirochetes affect the same pathways as Bartonella spp.

    Update
    Read that medium chain fatty acids are effective in inhibiting bacteria and are common in breast milk to support infants while their immune system matures. This is found in coconut oil supplement. This sounds perfect for immunosuppressed bartonella. Resolved to take 1 tbs coconut oil plus soybean oil free lecithin granules to help emulsify it and also to see if adding raw material might help counter the autoimmune response against the acetylcholine neurotransmitters. Had to return liquid lecithin due to it containing the immunosuppressant soybean oil (37%).

    Why didn't my doctor know to try this?

    Chose to forgo other herbs due to lack of scientific verification of effectiveness against bartonella strain.

    Update
    10/11/2010
    Took coconut oil at 12 p. Getting heavy immunopathology at 6 pm after three doses of 1 tbsp each. Wow this stuff works. Definite immunopathology reaction: nausea, headache, photosensitivity, lymph nodes went from 25% to 100% in size. I'm amazed that I still have this much infection left but it is what it is. I've had worse IP. I'd rate it 6/10. This is consistent with 30% clearance which was my estimation based on energy level improvement.

    10/12/2010
    Big increase in AM rising body temperature which rose from 96.0 F (before MCFAs) to 97.5 F (one day after treatment). 97 F rising is normal by the way while 96 F previously was hypothermic. Feel "sicker" with lymph nodes still at 75% enlargement and sore throat increased.
    Took supplements t 6:15 am. Measured body temp at 6:45 am, 99.5 F. Wow. Full hyperthermic IP reaction. This stuff really works!

    7:25 AM. Big energy boost. This is unexpected (and I'm not taking lecithin yet). Feel like I'm at 40% recovered. Inflammation isn't that bad. Some nasty constipation with pain and histamine reaction irritation but manageable. Found another patient who experienced this:

  14. Fejal

    Fejal *****

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    10/14/2010 Adverse effects- symptoms continue but lessened: dysuria, photosensitivity, tinnitis, nausea, bone pain, fatigue. Attempted exercise on treadmill. Treated dysuria with cranberry extract supplement. Capacity reduced by 50% at same duration. Noticed a twinge of angina so had to pause and reduce intensity to 2.0 mph which remedied it. Submandibular lymph node maximum reduced from 100% to 80%, minimum reduced to 25% and much more mobile. Cycling of node changes occuring faster. AM Body temperature elevation maintained but no fever seen again. Interpretation as good immunopathological response to oil.

    10/13/2010 7 AM Determined coconut oil was giving me gastritis. Took about one day to manifest then after any coconut oil caused immediate pain. To remedy purchased lecithin granules and ran a test. Ate brussel sprouts with half of oil (1/2 tbs), started to get gastritis. Immediately mixed 1 tsp lecithin granules in water and drank. Pain abated in 5 minutes. Finished remaining oil with very minor discomfort. Lecithin quickly emulsifies the fat so it can't irritate the stomach. Recommend taking lecithin before eating oil to allow it to disperse and dissolve.

    10/13/2010 9:54 pm
    Two main infected Lymph nodes cycling from englarged to moderate. Both extremes are smaller. Largest submandibular node has become mobile where previously was rigid. Body temperature didn't spike to low grade fever today like yesterday. High was 97.5 F. Needed a nap due to low energy. Excited about node shrinkage. Had acute bladder irritation which responded to cranberry extract. Suspect toxic reaction due to herxheimer reaction (immunopathology from bacterial die off).
  15. Fejal

    Fejal *****

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    Just received labs for antibody testing for bartonella hensalea and quitanis species-both negative. This was predictable given I didn't have symptoms for either one. Quest labs lost my bood vial for bartonella spp testing so I had to go to redraw. What a waste given it will probably be negative also.

    Looks like I"ll need the three day sample at Galaxy for bartonella spp. oh joy.

    2 pm

    Just spoke to Galaxy labs. Any treatment for Bartonella will likely suppress them and could make it harder to test positive. I have to stop all supplements, meds and BALI for a week to get the titer up. Ouch.
  16. Fejal

    Fejal *****

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    8 pm. Overall much more miserable following one hour of weak light exposure to the arms and head but body temperture maximum hasn't decreased. Lower end of body temperature swing has decreased off the benicar 1.5 degrees post-exposure and nose feels colder. Benicar seems to have provided protection against Vit 1,25D from sunlight (I allowed myself some exposure today to see the response and help culture the bacteria-yuck) but that lasted only a few hours as I am still not eating any 25D for the bacteria to convert. Smaller lymph nodes are enlarging but the max size of the larger ones hasn't enlarged. I think I am going to continue light avoidance and see what that does to the symptomatology-perhaps all the benecar does at this point is buffer some of the 1,25D.
  17. Fejal

    Fejal *****

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    10/15/2020 Encouraging that BART protocol made progress. Light continues to aggravate depression, fatigue and inflammatory pain. Decided to nix olmesartan and andrographis bacterial nitric oxide blocker supplement so will be continuing light avoidance, milk thistle and mangosteen. This should preserve immune function while allowing bacteria to recover slightly. Hopefully the super expensive three day PCR lab test can pick them up.

    10/15 9 AM. Wow, night and day difference symptom improvements for restored supplements milk thistle and mangosteen. Fast noticeable improvements in light sensitivity, depression, fatigue, inflammatory pain and nausea. Big stress reduction.

    10/15 9:32 AM. Double wow, 50% symptom improvement reflected in body temperture elevation. Rose from 96.5 to 97.6 F which is normal. Very surprised this is possible without olmesartan. Great to know I can get off this rx and still keep immune system working without having to rely on expensive, quacky alternative medical docs.
  18. Athene

    Athene Never give up

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    Fejal,
    The Lyme clinic I stayed at recently said coconut oil is really good for people infected with tick borne illnesses, so I think you are on the right track there. They said coconut milk is also good.
  19. Fejal

    Fejal *****

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    Thanks Athene. Make sure you take it with the lecithin though. The gastritis is very severe. Interesting that the lyme spyrochetes have the same biochemical pathway at bartonella spp. The restorative supplements are exactly the same.

    Until the three day test is completed I'm not aggressively treating the infection, just maintaining my imune status and keeping symptoms manageable so that means I'm giving the coconut oil and andrographis a rest. Will restart next month when the test is done. The test is very expensive and time consuming-three blood draws over three days. Good to know I'm past needing olmesartan as that was an expensive drug. That confirms the speed of BALI over the Marshall Protocol.
  20. Fejal

    Fejal *****

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    I still wanted to confirm the Bartonella spp. but so far my MD has turned uncooperative and is being difficult to work with. He gave me a letter stating that I have to find a new MD since he is terminating care. AM body temperature readings continue to improve while being on the immune sustaining regimen even without the bacteriostatic supplements. This morning's AM temp was 96.8 F. That's only 0.2 F below normal and my lymph nodes appear to be continuing to cycle smaller. As of now they are aroud 50% and more mobile on palpation. I definitely have increasing energy. The first sign of this was better more restful sleep. Next I noticed more energy after eating protein without and especially with carbohydrate. Now my endurance for daily tasks is increasing.

    Regarding the MD, it's really hard to find ones that will spend any time on you and be open to suggestions. I went with my current MD because he was the only one that would do the Marshall Protocol. I had to pay for all visits out of pocket and eventually he resented the amount of time he had to put into my case because there were some legal issues that needed to be addressed. The good thing at least about it is that I now have a direction and can switch back into real insurance plan doctors. Having the diagnosis CFS was horrible because here is no evidence based treatment. Bartonella spp. diagnosis, a much better diagnosis because that can be treated. I do not at all believe the idea that any specific retrovirus is causing CFS and do not want to waste time on toxic antiviral drugs; a conclusion I share with many researchers.

    Bartonella's pathway to knock out the immune system is to get macrophages to overproduce NF-KB signalling. Kemp writes:

    So bartonella's goal is to colonize macrophages by blocking their cell death through increased caspase 3 and increased NF-kb. Vitamin 1,25D (sunlight) also increases NF-kB. So infected individuals must avoid sunlight to keep NF-kB levels down to allow the immune system to repel the bacteria. This explains why individuals who took anti-biotics alone without additional immunosupportive therapy fail to resolve their bartonella infections (2, 3).

    References

    1. Kemp, VA. Cell Microbiol. Bartonella henselae inhibits apoptosis in Mono Mac 6 cells.
    2005 Jan;7(1):91-104.
    2. Wu, S. Vitamin D receptor negatively regulates bacterial-stimulated NF-kappaB activity in intestine.
    J Steroid Biochem Mol Biol. 2007 Mar;103(3-5):563-6. Epub 2006 Dec 23.
    3. Szeto, FL. Involvement of the vitamin D receptor in the regulation of NF-kappaB activity in fibroblasts.
    J Steroid Biochem Mol Biol. 2007 Mar;103(3-5):563-6. Epub 2006 Dec 23.

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