The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Adding Bartonella Henselae to the mix?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Strawberry, Jun 14, 2016.

  1. Strawberry

    Strawberry Senior Member

    Messages:
    799
    Likes:
    1,492
    Seattle, WA USA
    I just got off my 2nd phone consult with Dr K, and he now wants to treat me for bartonella. *sigh* I am to go off the Valtrex, and start two antibiotics for a year or more. Also, my chromogranin A is high, so he is adding Neuroprotek to the current MCAS mix of cetirizine (Zyrtec) and ranitidine (Zantac) twice daily of each.

    So it sounds like to date I have bartonella, all the lovely viruses, and suspected MCAS?
    When does the party begin? :confused:


    Here is the testing summary to date:

    Bartonella Henselae DNA positive

    CMV IGG 4.17 (above 1.1 is positive)

    Parvovirus B19 IGG 6.8 (above 1.1 positive)

    Mycoplasma Pneumoniae IGG 3.04 (above 1.1 positive)

    Varicella Zoster IGG 1.73 (above 1.1 positive)

    EBV Viral Capsid AG (VCA) AB (IGG) 5.00 (above 1.1 positive) (now normal after 6 months Valtrex)

    EBV Nuclear AG (EBNA) AB (IGG) 3.73 (above 1.1 positive)(now normal after 6 months Valtrex)

    HSV2 IGG Index >6.00 (above 1.1 positive)

    Herpesvirus 6 IGG 1:40 (<1:20 past infection)

    NK Cells, Functional 8 almost low (7-125 LU30)

    Tryptase 2 (2-10 ng/mL)

    Histamine, Plasma <1.5 (0.1-1.8 ng/mL)

    Chromogranin A 185 (0 - 95)
     
    CedarHome and wherearemypillows like this.
  2. wherearemypillows

    wherearemypillows

    Messages:
    38
    Likes:
    79
    Alberta, Canada
    I'm curious - which test proved positive for Bartonella? Was it the Galaxy triple draw? I went to OMI recently and I'm now waiting on Bartonella results from a skin biopsy. I had the skin taken from an area that looks suspicious for the Bartonella stretch marks, but if that is negative Dr K wants me to next do the Galaxy triple draw.

    You just reminded me that I need to figure out how to track down Neuroprotek in Canada lol - Dr K wants me starting on that too. None of my markers for MCAS are abnormal, but Dr K isn't certain yet that we can rule out MCAS as a possible cause for some of my symptoms. Similar to you, I've been doing fexofenadine (Allegra) and ranitidine in the morniing, and cetirizine and ranitidine at night.
     
  3. Strawberry

    Strawberry Senior Member

    Messages:
    799
    Likes:
    1,492
    Seattle, WA USA
    Yes, it was the Galaxy triple draw @wherearemypillows. Have you seen the book out by Dr Lawrence Afrin about MCAS? Blood tests easily can be normal.
     
  4. Theodore

    Theodore Senior Member

    Messages:
    686
    Likes:
    671
    France
    @Strawberry

    Hi! Just wondering if you saw an improvement in fatigue after Valtrex?
     
  5. RUkiddingME

    RUkiddingME Senior Member

    Messages:
    206
    Likes:
    363
    Canada
    I haven't been to OMI since last June but it seems like this is a new avenue they are looking into? Bartonella and MCAS. Maybe the focus is not on anti-viral treatment as much. I was on Valcyte for three years but now am on nothing and not doing too well. I'm hoping some new treatment emerges soon. P.S Hi from Calgary:thumbsup:

    I just saw on another thread called "is anyone taking Neuroprotek" and one member said he ordered it from a Canadian distributor.
     
    Last edited: Jun 15, 2016
  6. Strawberry

    Strawberry Senior Member

    Messages:
    799
    Likes:
    1,492
    Seattle, WA USA
    @Theodore I had zero improvement on valtrex... Actually, the pharmacy changed brands on me last week and the new brand was giving me massive heart palpitations, so eliminating it was good timing. I will still tell the pharmacy though so they have record.

    @RUkiddingME Bartonella may be a new avenue, but it might also be because he thought my symptoms sounded like lyme, but I am lyme free and had had cats most of my life. I wasn't tested for bartonella up front like most of his tests. Oops, that post was referring to someone else. Ah well, I leave mine!
     
    Theodore likes this.
  7. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,288
    Likes:
    12,029
    U.K
    I also have Bart.H and MCAS - great they tested your chromogranin A - don't think I can get that done here in the UK - im on ranitidne, loratidine twice daily and ketotifen for MCAS - can be hard to tolerate abx with MCAS - I don't tolerate most things well at all - drugs are my biggest trigger next to chemicals and then food.

    Of course all the infections we have probably caused the MCAS - so getting on top of both is a good thing. I tried neuropotek but didn't get along that well with it - may try it again as it was soi expensive.
     
  8. Strawberry

    Strawberry Senior Member

    Messages:
    799
    Likes:
    1,492
    Seattle, WA USA
    @justy Actually getting the chromogranin A test was somewhat of an accident. Dr K had emailed the lab test sheet for me to take, and I asked why it didn't have histamine or tryptase checked (thinking maybe he had ruled MCAS out). So he told me I could check the boxes myself. Since I had just been reading Dr Afrin's book, I knew chromogranin A was one that he tested, so I checked all 3 boxes! :cool:

    I am curious what your reaction to drugs is? I get heart palpitations normally. The first med reaction I ever got was at about age 19 and I got hives from an antibiotic, otherwise I seem to tolerate antibiotics. Everything else gives me heart palpitations. I'm not looking forward to long term use though as I just got my stomach healed from all those years of abx and chronic infection. As long as it doesn't make me go backwards....
     
  9. wherearemypillows

    wherearemypillows

    Messages:
    38
    Likes:
    79
    Alberta, Canada
    No, I haven't heard about his book. I'll do a search of Dr. Lawrence Afrin - thanks for the tip :)

    Hello fellow Albertan! I see I'm in good company here. I'm about 3 hours just north of you ;) I'll look into that potential Canadian distributor.

    Dr K still ordered all the usual viral titre testing for me, but none of those results were abnormal or showed an active infection. For Bartonella, he said he's found over the past year-ish that a significant number of his patients have evidence of Bartonella reactivation. They think all sorts of animals can act as vectors (cats, dogs, horses, etc) rather than just ticks, so I have the impression it's been higher on their radar in recent times. For MCAS, he admitted that I don't have a strong history to suggest that MCAS is one of my problems, but since meds are over-the-counter and essentially no risk, it is worth it to trial them.

    I really like that at the OMI they seem quite adept at picking up on patterns in their broad patient base, and are constantly re-evaluating the effectiveness of their practices. I learned a heck of a lot when I saw Dr K last month and keep meaning to write a post or blog about the experience.

    I'm sorry to hear you're not doing too well. Is there anything else that they recommend for you at this point, or have you left the care of the OMI?
     
    Last edited: Jun 16, 2016
    CedarHome, RUkiddingME and justy like this.
  10. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,288
    Likes:
    12,029
    U.K
    It's great that they are looking fir MCAS in their patients - its a lot more common in M.E than people think - some of my neuro symptoms were actually MCAS and have resolved with treatment - until I meet a trigger again - then I start jerking and twitching like mad again.

    Basically anything and everything, but in a number of different categories:

    1. The drug, supplement or herb makes me itch within a few hours to a day. The itching usually takes at least 3 weeks to lessen - basically the drug has caused a massive MCAS chemical hormone dump and it takes weeks or months to settle. The itching can be 24 hrs. a day or just at night when cortisol levels are low and their is a natural histamine dump.

    2. The drug, supplement or herb makes me feel anxious and wired, like I am revved up and have had a lot of black coffee. This stops once I stop the drug and happens with substances were this is not a known side effect.

    3. The drug, supplement or herb gives me a strong effect at a very low dose, especially anything sedative eg valium I need only take 1/4 of a 2mg tab to have an antianxiety affect. for Ketotifen I can only take half of 1mg tab otherwise I cant wake up - it took me 6 months to work up to a half a tablet.

    4. The drug, supplement or side effect gives me strong side effects that are known, or rare side effects. eg Allegra made me have suicidal ideation after only three days. this stopped as soon as I stopped the drug, it is so rare its not even listed on the packet as a side effect. DHEA, although deficient in this hormone just 2mg a day made me feel really angry, weepy and emotional.

    5. The drugs, supplement or herb causes atypical anaphylaxis. This has only started recently, and tends to only happen with injected drugs. Sub Q injections f one particular vial of Gamma globulins made me dizzy, lightheaded (immediately) my pulse dropped, my BP dropped, I get pre syncope, and then a sense of impending doom and feel nasty and scared and cant stand up for a couple of hours. This happened after a local anaesthetic without adrenaline as well - so now I cant get my teeth fixed safely. I need to lay down for about two hours, then it passes and I feel ok again. I didn't use my epipen as im more scared to use it and have to go to ER than I am of the reaction. This is atypical anaphylaxis. I also get hot, cold, sweaty, clammy shaking etc.

    6. Once I had a seizure after trying a new inhaled medicine. Its not know if it was the steroid or the new air chamber that caused the reaction. Immediately I took it I started feeling my heart pounding and thought 'oh dear' so I stood up to find my husband and felt very lightheaded and sick. I went and told him and he said I looked pale and should lay down - I started shaking and felt the sense of impending doom, then I lay on the sofa and for half an hour had strong and severe myoclonic type jerks - arms and legs flailing around out of my control. The side of my mouth went down in a strong muscle contraction and I couldn't speak. I was conscious and felt totally calm. I tried to speak but my mouth was so misshapen I couldn't - I started drooling. Afterwards I felt totally wiped out for two days and had to spend a week in bed recovering. The GP was only worried about a stroke and other than that I got the whole 'weird things happen o people sometimes' spiel that they give to people who they think are nuts. I'm sure Dr Afrin would understand this kind of reaction. The jerking movements, which were happening many times a day every day now only happen if I am triggered by something, especially perfume or strong chemical smells - never had another seizure like that one.
     
    CedarHome likes this.
  11. Theodore

    Theodore Senior Member

    Messages:
    686
    Likes:
    671
    France
    Thank you.

    Did he offer you Valcyte also?
     
  12. Theodore

    Theodore Senior Member

    Messages:
    686
    Likes:
    671
    France
    Since we are talking about bartonella, is anyone aware if costochondritis can be due to it?
     
    Last edited: Jun 16, 2016
  13. Strawberry

    Strawberry Senior Member

    Messages:
    799
    Likes:
    1,492
    Seattle, WA USA
    That is an interesting thought. Based on the description from here: http://www.mayoclinic.org/diseases-conditions/costochondritis/basics/definition/con-20024454 it reminds me of what used to happen to me a few years ago when neuropathy was really bad. I called it my boa constrictor. I would get a squeezing sensation from the bottom of my ribcage down to about halfway down my thighs. Similar to contractions during pregnancy, but not quite the same as it wasn't a physical contraction. It was a sensation only apparently? But I have no idea if this is the same thing.

    Re: Valcyte, we discussed it, but he feels the bartonella is responsible. I guess I will have to revisit the CMV in the future if nothing changes, but there is a family history of liver disease that I refuse to take something that will harm my liver.

    @justy You mentioned a few reactions that I have had and didn't connect to possible MCAS reactions. That was enlightening! Sorry you have such a tough list. I hope you get improvement.
     
    justy and Theodore like this.
  14. Strawberry

    Strawberry Senior Member

    Messages:
    799
    Likes:
    1,492
    Seattle, WA USA
    wherearemypillows likes this.
  15. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,288
    Likes:
    12,029
    U.K
    Apart from the amazing content and easy style of the book, the best thing about it for anyone with MCS is that the brand new book didn't smell of anything at all - no ink smell, no paper smell. The first brand new book I could read straight away in a long time!
     
  16. TrixieStix

    TrixieStix Senior Member

    Messages:
    531
    Likes:
    878
    Justy,

    I'm interested in what you wrote as when I had some kind of major neurological flare in April I experienced muscle twitching, uncontrollable jerking of my left leg, left arm and head. Along with very screwed up vision and a week after the onset of those symptoms I experienced a 22 hour episode of the left lower part of my face and mouth contracted down as well affecting my speech (was not Bell's Palsy). Plus many other neuro symptoms. As for the jerking, for me once it calmed down a bit after some days it would get triggered in social situations where I had to interact with people. It was as it was overloading my brain or something. Slowly over a few months it seemed to go away, but I've been left with a slight head tremor that comes and goes (sometimes it's just an internal tremor).
     
    justy likes this.
  17. TrixieStix

    TrixieStix Senior Member

    Messages:
    531
    Likes:
    878
    @Strawberry

    I am a patient at OMI also. I am going thru all the initial testing at the moment. I was supposed to have already sent of the Galaxy Bartonella testing, but given it costs $1,000 I decided to hold off until finding out the results of my Lyme and co-infection testing plus a standard Bartonella test thru Quest. I figure if I test positive for Lyme or Bart on the testing that my insurance pays for it would save me having to pay for the Galaxy test. I find out the results Tuesday via phone appt.

    As for the rib/chest symptoms you and @Theodore were discussing, I too have experienced such symptoms. It was actually the reason I made sure to get tested for MS as I was experiencing and still experience what is described as the "MS hug". For me the first episode was very unique in that it was strictly Intercostal spasm (I could feel the muscles inbetween my ribs tighten) that began on one side of my rib cage, and then slowly spread to the other side and lasted for an hour or so. That particular thing has not happened again, and instead I now get episodes of the "MS hug" like thing or air hunger.
     
    Theodore likes this.
  18. Strawberry

    Strawberry Senior Member

    Messages:
    799
    Likes:
    1,492
    Seattle, WA USA
    Hi again @TrixieStix My personal opinion right now is it is worth saving your money. Unless you really think you have Lyme or Barts and would improve from treatment. But I am now going to hold off on everything. I think good things will start to happen. i'm saving up for treatment baybee!

    So you have the MS hug too? Thankfully I haven't felt that in quite some time. I still don't know what caused it, or why I no longer don't seem to have it. knock on wood. Although mine started below the rib cage and went down into my thighs. It was more like early labor pains. I do still get the air hunger, although I now am wondering if this is MCAS related? I'm so unsure.
     
  19. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,331
    Likes:
    21,477
    Albuquerque
    Do you know which antibiotics? I also tested PCR positive for Bartonella and took rifampin for a year. It really set me back and also tanked my cortisol. If this is one of your drugs be sure to talk to him about cortisol testing as it is known to affect it.
     
  20. TrixieStix

    TrixieStix Senior Member

    Messages:
    531
    Likes:
    878
    My doc and I discussed Bartonella the other day and, they want me to go ahead with the Galaxy testing, but not knowing if Medicare will pay for a portion of it or not makes me hesitant. Would my doc looks at a negative test result and say...let's try treating it anyway? I should ask them this question. Burning painful feet has been a constant symptom for me for some years now, even before ME/CFS symptoms began. But Fibromyalgia can cause neuropathy symptoms in the feet as well?

    What was your experience with the Bart treatment? Do you feel it helped at all, hurt, no change? What did you take and for how long?
     
    Last edited: Mar 2, 2017

See more popular forum discussions.

Share This Page