Home Forums General Discussion J. Herxheimer

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  • #299911
    Michele
    Participant

    Is anyone else out there tired of herxing?

    My frustration just goes over the top on days like today. I've been on 2 mg of minocin. Two weeks ago I tried moving up to 3 mg, and had overpowering herxing. So I moved back to 2 mg for longer. Two days ago I tried 3 mg again. Same thing overpowering herxing.

    I am so discouraged that I hardly know where to turn.

    How is a disease flare different than a herxheimer?

    Should I just stop minocin for a week to see what base line disease is?

    What is RA anyway? My whole ribcage and back is just “on-fire” as well as my knees and muscles. Prednisone doesn't help me. I don't have swollen red joints, but they HURT. The pain is so over the top.

    MP's definition of “pea soup” at least gives me a definition of disease with Th1. But the risks are high. The benicar could “help” control the herx, or it could just potentiate the minocin and create a bigger herx. The 25 mg start sure doesn't equal the tolerable herx I get from 2 mg. But am I really going to get better on 2 mg of minocin? (I know no one can answer that one…but I ask myself that everyday.)

    How much does everyone else herx on AP? Is anyone finding a tolerable herx level? I've had only 1 day where I felt like I was almost normal. Today I just want to give in and move along to the standard drugs. But since I don't fit that mold either, I don't know which way to go.

    If my “RA” started from the 3 pneumonias leaving behind their L-forms, would this account for all the pain in the rib cage? The pulmonologist said it wasn't pleuricy. X-rays and CT's are clear.

    :headbang:

    I'm sure feeling like a trapped animal right now. Help!

    Michele

    #309924
    Maz
    Keymaster

    Hi Michelle,

    With your mention the other day of your boys having repeated strep…and your nodules…I can't help but feel you have some coinfections going on that probably need addressing. Any chance Dr S would be up to changing up your abx, like Fran has done? Maybe ask to try amoxocillin for a bit and then go on to zith instead of mino? Others seem to report less herxing on zith, which is a pretty broad spectrum abx. Maybe once you're over the worst, you could then retry the mino and see if you can tolerate it better, later.

    Are you still waiting on your IGeneX tests to come back? I think mine took a couple weeks… Would be good to know if you have babesia or some other coinfection going on, as well, as that may be affecting your rib cage pain.

    I completely understand how frustrated you must feel. Although I don't have the same level of sensitivity as you to the tetracyclines, I was in agony for months until things improved. Mind you, I was on a continuous combo of abx, so it was probably covering a number of things at once, but the herxing was unbearable….not like the more controlled herxing most get with the MWF pulsed dosing.

    There are lots of different abx options to try before giving up completely. I know Lyme docs tend to be on the expensive side, but one thing in their favor…they're generally not afraid to try different protocols and combos of antimicrobials…whether they be abx, anti-protozoals, anti-fungals, etc.

    Hang in there, Michele, and try not to give up yet…easy to say, I know, but there are other options out there, if you're just not getting along with mino.

    You're in my thoughts and will get back to you next week, as promised, after I see my LLMD. I decided I'd probably get better info if I asked him in person about Dr L for you.

    Peace, Maz

     

     

     

    #309925
    Tiff
    Participant

    :crying:  Michele,

    I can SO relate to your post!  What is RA anyway!?!  My symptoms are completely different than yours, and others seem different than both of ours, yet lumped together and abandoned is a bit how we all feel, isn't it?  Like that poor senator in Florida from the other thread.  No wonder the public isn't educated about RA, when it has no clear cause, no clear symptoms, no clear prognosis, no clear treatment, how can you educate the population at large?  It would only instill fear.  And for good reason.

    It sometimes seems to me that in addition to the joint issues, most people have some other system that sort of plagues them.  Most people seem to have other issues related to digestion.  They have acid reflux, or foods that make them feel worse, or gas and bloating, or constipation or something like that.  Some people, like you, seem to have respiratory issues, perhaps pneumonia, bronchitis, rib pain or even sinus issues.  For me the other system that is plagued is my skin, which has gotten much better on AP, but breakouts are still an issue for me and have been for much longer than joint pain.  Some others have psoratic skin issues, which is different than mine, but skin related.

    I wonder if this isn't because these three areas represent the major immune defense fronts – the gut, the lungs, the skin.  Maybe the infection started in one of these areas and they are hunkered down there.  You will Herx the most in one of these systems, but perhaps even more far and wide the longer you have been sick.

    As far as MP, I am also right where you are.  What on earth will happen when I switch to Benicar?  I may be miserable a lot right now, but it is amazing how well my family and I have adapted, and this will greatly rock that boat.  If I was doing as well as I was last summer, I would not consider it.  Under the circumstances I think it is worth the risk.  But who knows?

     

    #309926
    linda
    Participant

    There are joints where our ribs connect to our sternum and spine,as well as connective tissue, which can become inflamed and painful. When tendons are affected, it is called enthesitis, and can be very painful. Have you tested positive for RA?, I ask because your symptoms sound closer to psoriatic arthritis- possible tendon involvement, rib pain. How did your doc determine that you didn't have pleuricy? Enthesitis and pleuricy are more common in PsA. Either way, the treatment is the same.

    I'm so sorry you are feeling so badly, I hope things start to calm down soon.

    linda

    #309927
    Michele
    Participant

    Thanks for the support all,

    It's a rough night. IgeneX has the samples and I won't know for 2 more weeks. The rib cage / lung involvement is babesia related, but my doctor wouldn't order that test. He was certain it is not babesia. I can't recall why. Geographic location I think. Maz, how did you get through all the herxing??! Bless you so much.

    My RF was 104 in Sept. In January it was normal range. In fact, the only blood work out of range in Sept. was the RF.

    Linda, what is psoriatic arthritis? Do I resemble that instead of RA? I thought that had skin involvement…but I have never really looked at it. My tendons “snap” a lot in my ankles.

    Tiff, herxing in the rib cage the longest is my biggest fear. Beyond it being incredibly painful, it keeps me from my profession as a wind player. How do you homeschool and write. Wow! I bet your kids are great kids.

    Here's an element of hope for Benicar sent by an MP angel. http://www.marshallprotocol.com/forum32/1784.html
    It “acts” like enbrel but allows the death of the L-forms. Whoever is thinking about starting this, we should all hold hands and jump together like parachutists out of an airplane.

    Thanks for the support. I feel like crying to have met people as caring as you guys to let me vent and totally understanding. I am feeling the isolation from “regular” people because they just don't know what to say to me.

    I'm going to try to sleep again.
    Pleasant dreams all,
    Michele

    #309928
    linda
    Participant

    hi Michele,

    PsA is differrent from RA in several ways. It is not as damaging to the joints, but can be more painful; this is because the tendons, muscles and even the bones surrounding the joint become inflamed. Finger and toe swelling is called “sausage shaped', that's exactly what they look like. The usual presentation is with psoriais first, followed by joint symptoms months or even years later, but that's not always the case. Some don't have skin involvement, but that is rare. I've read articles that state that about 5% of people w/psoriasis will develop PsA, others say as many as 20-30%. Joints involved are commonly fingers, wrists, toes, but any joint can be affected. There are about 5 subcategories, depending on the symptoms and location of joints involved.  Altho usually asymmetric, there is a form called rheumatoid-like because it is symmetrical. Ankylosing spondylitis is another form. People with PsA usually don't have severe skin involvement, but they commonly have pitting and psoriasis in their nails. Enthesitis and spine involvement (spondylarthropathies) are more common. There is no blood test like there is for RA, but your sed rate, ANA and other AI tests will be abnormal. Systemic symptoms such as organ involvement are rare. Of course, there is always the fatigue. It can be difficult to treat because of the involvement of other tissue surrounding the joint. Psoriasis alone is an AI dx, and responds well to the biologics, I have read here that it also responds to AP, but can take longer to see improvement. I'm forgetting something, it was just in my head and now it's gone- I'll edit it in when I remember.

    Got it back. Rib involvement is common, esp. in the tendons, also pleuricy. That's what made me wonder about your diagnosis.

    linda

    #309929
    casey
    Participant

    Hi Michele,

    I hear ya on this. I started with rashes and hives and some abnormal urinalysis which led to my MCTD diagnosis. I started on a low dose of doxy last yr and then ended up with some scary kidney problems. Had to change abx 3 times to get it under control. I think the low dose caused some herxing which led to the more severe kidney probs. Now after that cleared after a month on levaquin and back to doxy daily and zith periiodically, i have some kindey tenderness again. Am waited it out with routine testing but i dont know whether this is herxing or just progression. Thats the scary part.

    Also, i had pleurisy when i was 18. Pleurisy is asociated with lupus which no one told me back then. It is so excruciating that you literally cant breathe in or out wothout severe pain. There is wet and dry pleurisy. One causes pain breathing in , the other out. You feel it in the lung area in the back. treatment for that was..tetracycline daily for 10 days. It worked back then and took it away but now i have all this.

    I also think that we have TH1 inflammation and having said that, this bacteria is in many places we didnt imagine. this is a good question for John as his wife , i believe but dont quote me, had asthma and when she started abx , it came out as RA. i believe in the “pea soup”!

    Michele,

    i agree with Maz on the co-infections and about the strep part and i am with you on the benicar thoughts.

    Casey

     

    #309930
    casey
    Participant

    Michele,

    BTW, i went through x-rays and emerg 5 times in excrutiating pain from pleurisy. Only one test showed it in the end and that was , i dont know the name, but i know i had to sit at a machine and breath into it for 15 minutes. It was almost as painful as having kidney stones. It was a lung scan of some sort but not CT. They almost missed it at the hospital and i had to literally cry and scream to make them do something. 10 days of high dose tetracycline took it away then but i was unaware of all these “connection” at the time.

    Does breathing in or out hurt and if you gasp for breath or cry , is it excrutiating?

    And i too am tired of herxing or progressing or whatever this is, i'm tired of everything…but i wont give up.

     

    #309931
    Loria Chaddon
    Participant

    Hi Linda,

    Side note here.  We are thinking of moving to Tucson to help my husband deal with his Raynaud's and Rheumatic monster.  What is it like there?  Would you recommend it, seeing as you live there?

    Just curious if it might help.  Thanks

    Loria

    #309932
    Loria Chaddon
    Participant

    Hi Michelle,

    I work with someone here at the University that has a type of Psoriatic Arthritis.  She has no skin involvment at all.  So maybe…

    Good luck.  I can empathize with you from the view of someone who's husband is in pain most of the time.  :doh: We joke sometimes that the only thing that doesn't hurt on him is his backside.  At least he can sit down.  :roll-laugh:

    I think Maz might be onto something, about changing the type of antibiotic.  Maybe you are hypersensitive to Mino or tetracyclines. 

    You know, people like us, those who are sick and those who love them, we learn to live moment to moment, and day to day.  I would send you a great big internet hug, but that would probably hurt. :roll-laugh:

    #309933
    linda
    Participant

    I'm not sure how to respond. This is the third time I have lived in AZ. The first 2 times I was in a bad flare, and w/in 2 months of moving here I was in complete remission with no meds. We were military, so our stays were temporary. About 10 yrs ago the PsA returned and has become progressively worse, so I decided that when my youngest graduated I would move back here in the hope that I would again go into remission. I've been here 1.5 yrs and I've never been more ill. However, the only other time I was close to being this sick was when we lived in Tacoma, Wa., so I understand where you're coming from wanting to move to a dryer, warmer climate.

    The university hospital here is one of the major centers for AI dx research, but they are not using AP. So far I've only been able to find one AP doctor in the entire state, in Scottsdale, and unfortunately, I fired him about 6 months ago (e-mail me if you want more info on this). He does not do IV abx. There is a rheumie practice in Phoenix that will provide AP, oral and IV, but from what I've heard they are in the group of docs who believe in the anti-inflammatory properties of abx. Who cares tho, right? Unfortunately, they don't contract with my insurance company.

    As for Tucson itself; the mountains are beautiful, the weather is great, but a big city it ain't. S.Tucson has a high crime rate, and there are pockets of N. Tucson that do as well. The safest parts of town are the NE and NW areas. If you like hiking/biking it's great. If you like an exciting city life, go to Phoenix. Phoenix and Tucson are about 2-2.5 hrs from each other. Tucson is an interesting population; there are some very wealthy, some military, health and exercize nuts, and lots of disabled and retirees. Also many illegals.

    The cost of living is high here, and the housing market is also very expensive; altho not as bad as CA, speculators have driven up the prices. It is one of the top 10 worst places to sell a home at this time. There are over 50,000 homes for sale in Tucson, many more than that in Phoenix. Az is one of a few states that has a HIPAA law in place that prevents health insurance companies from denying coverage to people because of pre-existing conditions. But there is no specifications on how much the insurance companies can charge- my monthly premium is 1,030.00.

    Traffic is really bad in Phoenix, like CA and east coast bad. In Tucson, it's not as bad, but it is difficult to get around because there is only one main highway and it's on the west side of town. The streets are laid out like a grid with lots of stop lights, and they are cluttered with many small businesses and strip malls. If I could afford it, I would live in the Phoenix area, but it is more expensive than Tucson.

    Both cities have great universities, but the public school system in Tucson is not great; I don't know about Phoenix. You might consider snowbirding here next winter for a few months to see how you like it and if it makes a difference in your husband's health. I know it's dry, but we do have a problem with mosquitoes here, too. In the summer we have a monsoon season with some pretty amazing thunderstorms, which I love. So that's all the info I can think of, and probably more than you wanted. Oh yeah, did I mention we have the most beautiful sunsets in the world?!

    linda

    #309934
    Loria Chaddon
    Participant

    You gave me quite a bit of very useful information.  And I thank you.

    Hmm, beautiful sunsets?  You would be hard pressed to surpass the beauty of sunrises and sunsets here in Fairbanks.  I look forward to seeing those sunsets, as I am a photographer.  🙂

    The dryness of the environment would be no problem, as the interior of Alaska is considered to be a desert environment.  And we have wicked mosquitos here, they bite right through heavy denim.

    One of the reasons we chose Tucson to move to is that is is not a big town atmosphere.  The population of the city of Fairbanks is just over 31,000 people.  The entire Bourough (like a county, and this one one of the largest in Alaska) is just over 82,000.  My husband and I are both used to a small town environment.  Tucson will seem big to us.

    I would be trying to get a job with the University and my husband with the school district.  That would give us the perfect opportunity to be snowbirds.  Tucson in the winter, Fairbanks in the summer.  The best of both worlds, don't you think?

    Alaska has the highest cost of living, besides Hawaii, in the US.  And it is hard to get fresh, RIPE produce here because of how far it has to travel.  Pay rates are pretty decent here, and that helps to offset the cost of living.  I dare say pay will not be so good there.

    Depressed housing market, huh.  Maybe someone will be wicked desperate and we can get us a good deal on a home with some land.  I am thinking we should rent the first year and see, then look at buying.  Scott wants to buy right off.  He hates the idea of renting.

    Luckily, the kids are grown, so the local school district scores are not such an issue.

    Hmm, lots of info and food for thought.  And thank you on the hint for the safer areas of town.  That is also something I like to take into consideration.

    Loria

    #309935
    linda
    Participant

    We'll have to agree to disagree on the sunsets, but I do envy you the aurora. I've never seen them, but it's at the top of my things to do before I die list. Tucson has a population of about 1 mill, but it's so spread out that it doesn't feel like it. There are only a few tall buildings downtown, otherwise nothing over 2-3 stories. A few big shopping complexes, but for the most part just individual businesses. It can be a bit of a hassle because they don't like to combine their grocery Wal-mart or Target with the retail depts of those stores; separate buildings, separate neighborhoods. But it's all in keeping with their philosophy of a small town feel, and maintaining the view of the mountains.  It sounds like you would enjoy it; I wanted to join a hiking club when I got here, but have not been able to. I know I would enjoy it more if I could, I love to hike. AND the desert is so beautiful, especially during monsoon season, some people think the desert is bland, but I love it. Mt. Lemmon, on the NW side of town, is the tallest mountain in Az. The Catalina highway winds up through it with lots of hikes and overlooks, even skiing in the winter.

    And you're right about buying a house, it's definitely a buyer's market here. My only complaint really is that there doesn't appear to be a lot of pride in maintaining property, personal or public, in that it definitely differs from Phoenix. But so much to do outdoors, it more than makes up for it.

    linda

    #309936
    Maz
    Keymaster

    Hi Linda,

    Your mention of psoriatic arthritis piqued my attention, as my Mum-in-law in England has this, along with ankylosing spondylitis…think I mentioned this before when we have spoken. Anyway…I remember asking my Mum-in-law if RF could be elevated in psoriatic arthritis and she said hers never was. So, I did a little searching around and this article seems to verify this – under “Diagnosis”.

    http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/psoriatic_arthritis.jsp

    “Diagnosis

    Skin and nail changes characteristic of psoriasis with accompanying arthritic symptoms are the hallmarks of psoriatic arthritis. A blood test for rheumatoid factor, antibodies that suggest the presence of rheumatoid arthritis, is negative in nearly all patients with psoriatic arthritis. X rays may show characteristic damage to the larger joints on either side of the body as well as fusion of the joints at the ends of the fingers and toes.”

    As Michele had a significantly elevated RF before IV treatment, do you think PsA is still possible?

    This is an interesting site, listing all the possible differential dx's causing an elevated RF:

    http://wrongdiagnosis.com/a/ankylosing_spondylitis/book-diseases-6a.htm

    AS doesn't seem to be listed amongst these either. 😕

    Peace, Maz

     

    #309937
    Maz
    Keymaster

    [user=50]Michele[/user] wrote:

    Thanks for the support all,

    It's a rough night. IgeneX has the samples and I won't know for 2 more weeks. The rib cage / lung involvement is babesia related, but my doctor wouldn't order that test. He was certain it is not babesia. I can't recall why. Geographic location I think. Maz, how did you get through all the herxing??! Bless you so much. 

     

    Let's hope the IGeneX tests will offer some clues to what's been going on for you, Michele. Any idea why the doc was reluctant to include babesia testing? Just find it a bit weird that he can be so certain it isn't that. Even my LLMD wanted to rule it out in my case, as symptoms vary. Well, maybe if your tests show Bb exposure this will provide incentive to seek out an LLMD and it won't be a question anymore.

    Like you, I must admit find it hard to believe that 2mg of Mino is going to be doing any good. If you're still herxing that much still,  it sure does sound like it's time to rethink the protocol and try a different abx.

    How did I get through the herxes in the beginning? You know, looking back I just don't know, except that I'm very bull-headed and wasn't going to give in to the usual rheumy drugs. For months, I just sat or lay down on the sofa and watched tv – evn holding a book was too painful….I had no life to speak of and the big events of the day were just making it to and from the bathroom. Of course, it was an enormous help that my kids were older and I didn't have to work. Your situation is very different and I'm sure the pressures and guilt to be the 'old' Michele must be causing you a lot of angst….just not being able to play your wind instruments must be really stressful and worrying, as I know this is important to your job. All this will be adding to your symptoms, too, so don't forget to be kind to yourself. You might have to let go of some extraneous things for a bit – take a sabbatical and just focus on getting well. Sometimes just forging on, but feeling you're not doing things as well as you used to can really do a number on us, too. The guilt I felt at not being able to do the smallest things for myself – getting dressed, squeezing toothpaste, getting up from chairs, etc. all added to the strain and slowed my progress, because it all added to the depression. So, if you have to work, just do what you absolutely have to do and leave the rest. Letting go was one of the hardest things I had to learn to do…worse than the wretched pain at times.

    You're in my thoughts…..

    Peace, Maz

     

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