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Would you try a Lyme disease treatment ?

Discussion in 'Alternative Therapies' started by Dechi, Jul 28, 2019.

  1. Dechi

    Dechi Senior Member (Voting Rights)

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    i know there is a lot of controversy over chronic Lyme treatment, but let’s do this with respect. I am not saying chronic lyme is a real thing. I am not saying it’s not. I’m neutral.

    I have seen a new doctor recently, thinking he would treat me for ME/CFS with a new approach. Instead, he went the Lyme route. Since ME and Lyme symptoms are often very similar, if not identical, I can understand why he thought of it. I also had a child who was bitten by a tick 20 years ago. The tick wasn’t a carrier, but I could have been bitten by one who was since I was present when it happened. Apparently 50% of people who are infected never had the rash or even saw a tick.

    Anyhow, this doctor wants to treat me using the antibiotic course. Three antibiotics on top of the other, for a period of 1-2 months to start with. And go from there. The doctor will be available if I have questions or apprehensions (not making money out of it).

    This doctor is not doing this for money. His services are paid by medicare, whether he treats me or not. He is very in demand and doesn’t need one more patient. In fact he needs less. The only benefit he might have, and I’m not even sure, is that he might be conducting a study.

    Here is my reasoning : even if there is only 2-3% chance that this would cure me, am I willing to miss that chance ? Will I regret it down the line if I don’t at least try ? I have been declining for the past two years. At the rate it’s going, I’m not sure I’ll be able to take care of myself in a few years. I live alone. That would be a nightmare, I don’t know what I would do.

    On the other hand, I am hypersensitive to meds and I can react very strongly to them. I also have irritable bowel syndrome, and have occasional « gastric episodes » that leave me in severe pain lasting 12 to 24 hours.

    I am asking you, not to create disruption or controversy, but because I respect the opinion of the majority of the people on this forum. And this is a very big decision, with great potential side effects but hopefully, improvement.

    Thank you.
     
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  2. duncan

    duncan Senior Member (Voting Rights)

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    How is your QoL while on his prescribed treatment? On what basis does he determine you have Lyme? Are yo alright with me digging a little?

    You may not like it if others hold up your Lyme diagnosis to a higher level.
     
    Last edited: Jul 28, 2019
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  3. Dechi

    Dechi Senior Member (Voting Rights)

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    I don’t think I care what people say. I don’t really believe 100% I have Lyme disease. I am sceptical, which is why I am asking for opinions.

    I don’t know what « QoL » is. Quality of life ? I haven’t started the treatment yet, as I don’t know if I am going to go ahead with it. I know many people struggle with it, it is not an easy treatment. Some have to stop it, they can’t tolerate it.

    I’m also looking at herbal treatment, but it’s very expensive, especially when you’re not even sure you have the illness it’s treating you for. At 200$ per month, this could be a racket.

    I have been tested for Lyme, the first test came back negative. I’m waiting for the results for the last one, but I expect they will be negative as well. The doctor I could have gotten the disease 20 years ago and only felt it’s effects in the last few years. Also, apparently you can have it even if your tests come back negative. So he won’t take into account the results of the test, they’re just useful if positive.
     
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  4. strategist

    strategist Senior Member (Voting Rights)

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    I regret ever making the foolish decision.
     
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Hi @Dechi. You say you do not mind what people say. I guess you are asking for medical advice, and the advice ought to be to do what your doctor says. But clearly even you do not really believe that your doctor is giving sensible advice. So what do we say?!!

    My impression is that you know the answer.

    To me if a doctor wants to diagnose Lyme when there is no evidence then they are best kept well clear of. There is of course the point that just trying a short course of antibiotic might be worth it on the off chance if there is nothing else but my understanding is that PWME can run into problems with unnecessary treatment. Anyone can with antibiotics. My wife nearly died of a psychiatric reaction to such drugs.

    The fact that the doctor is paid by medicare seems to me not relevant. If he is very busy he is making money and I suspect because he is diagnosing everyone with Lyme. He may get the money for your case whether he treats you or not but if he has a reputation for diagnosing everyone with Lyme and treating them he is likely to get lots more cases.

    Of course that analysis would be unfair if he really has a good reason to diagnose your with Lyme but you say he hasn't.

    The more I learn about the disaster of medical care for ME/CFS the more I see the extent of dumbness and self-interest in medical colleagues of all sorts and flavours. The people with the unhelpful beliefs are the doctors. They love playing at being clever, more than anything. Where this doctor fits in I do not know, but I think it is worth being aware just how loaded the odds are.
     
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  6. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Is it possible to test for the presence of borella or the other bacteria that can cause tick fever? I am assuming not in chronic Lyme’s. My German godson has infrequent but regular, ever four or five years, undiagnosed symptom bouts including chronic fatigue and brain fog, on one occasion severe enough to require inpatient management. It has always seemed very frustrating given he grew up in an area where ticks are known to carry borella and he had a number of bites as a child, that they have not ruled out chronic Lyme’s, or have not treated for it anyway.

    Presumably onset patterns, might be useful in distinguishing Lyme’s and ME. For example, I have had in my pre ME life many ticks crawling onto my body, though I can not now remember if any had bitten me before brushing them off or squashing them, however I guess it is possible/probable I have been bitten without realising it. On one occasion walking barefoot in a wood I had about a dozen ticks attempt to crawl onto my foot at the same time, though this prompted me to move on fairly rapidly. Although not then aware of the label Lyme’s disease, I was aware that tick fever could be serious so would have looked out for bites. Also I had regularly stayed in an area of northern Germany where Lyme’s is present. A good friend had it, the father if my godson, but was treated soon enough to prevent it becoming chronic. He was lucky to have the classic rash.

    In general though I have had no relevant symptoms prior to to the onset of my ME, which was sudden and associated with a bout of glandular fever (tested positive for Epstein Barr). I can pinpoint this onset in terms of symptoms appearing to the nearest hour. I did apparently have a spontaneous total remission and my second ‘onset’ was associated with a bad bout of influenza, though was not tested for the underlying virus. So though I could potentially have been at risk of Lyme’s my onset pattern would seem to give me an adequate and probable explanation of the ME without any need to consider chronic Lyme’s being involved.

    I suppose it is theoretically possible for me that the relevant Lyme’s bacterium was present symptomless for a number of years, but was triggered by a subsequent cooccurring infection of something else, though this seems a much less likely explanation here than the glandular fever triggered my ME. Also there is the logical likelihood that there are at least a few individuals that might both have Lyme’s and ME arising from distinct causes/triggers but we may never know until clinic testing is a routine option.

    In contrast my godson’s undiagnosed intermittent symptoms had more gradual onset, first appearing at a time of stress during his Abitur (A levels), in his early twenties; he has dyslexia and returned to school after his apprenticeship and some years working. Between bouts he has apparently complete remission, though now seems to use rest to avoid significant relapses. [So here there is no obvious single clear cut diagnosis, though for him ME can not be ruled out either.]

    @Dechi, does your onset pattern give you any support either way to whether you might be at risk of having chronic Lyme’s rather than ME?
     
    Last edited: Jul 28, 2019
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  7. duncan

    duncan Senior Member (Voting Rights)

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    @Dechi, regardless of whether you accept his protocol, I'd personally want to know a couple of things.

    First and foremost, when he says Lyme, does he mean Lyme? Does he suspect anything else that he is just rolling into Lyme, eg, bartonella? If so, why does he think that? Did he test for them?

    Second, did he do a Western Blot for Lyme?

    Because you are sensitive to meds, this is a therapy that could have negative consequences. I personally would want labs to help with my decision. He takes medicare, so he should be ok with this on paper. I know asking a doctor to do something he has not suggested can be awkward, but this is something I would request. A Western Blot would be key.

    If the WB comes back empty, that helps with your decision. If it comes back suggestive of Lyme, that helps, too.

    In my opinion, the more info you have that is specific to you, the better it helps resolve your concerns.
     
    Last edited: Jul 28, 2019
  8. duncan

    duncan Senior Member (Voting Rights)

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    A Western Blot may at least tell you if you were once infected. They will list which bands are positive, if any, and this matters. I'd request a C6 as well. I would NOT settle for the doctor saying it's negative, or even if it's positive. I always get the values, a hard copy for my records.

    Of course, double check to make sure your insurance covers the labs.

    I'd also let this doctor know you are sensitive to meds. Maybe that will encourage him to look a little harder for evidence.
     
    Last edited: Jul 28, 2019
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  9. duncan

    duncan Senior Member (Voting Rights)

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    A thought just occurred to me. You say you tested negative. Did you doctor say anything about provoking a Bb response?
     
    Last edited: Jul 28, 2019
  10. Dechi

    Dechi Senior Member (Voting Rights)

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    Thank you for your input. Do you care to share why ?
     
  11. Dechi

    Dechi Senior Member (Voting Rights)

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    I just wanted to point out that he won’t be making a lot of money off of me. His motivation cannot be money in this case.

    Also I am not looking for medical advice, I know it is against the rules. I’m looking for personal opinions on the matter and asking « what would you do if you were me », which is entirely different.

    . This is what the first test was testing : borrelia burgdorferie, IgG/IgM.

    I have sudden onset, two different viral infections within two years of each other. After the second one I became incapable of having a normal life. And it has gotten worse since, even though my job is now « pacing and resting ».

    I believe he really means Lyme, he has never said otherwise.

    He said we would do the Elisa, and if it was positive, then we would confirm with the Western Blot. He also said that negative results weren’t necessarily accurate. I guess we did the Elisa, I went twice, 3 weeks apart and I am waiting for the results for the second part. First part is negative as said above.

    I don’t know what a C6 is. I’ve had a G6PD that was normal. I also keep lab results in my records. I have them all.

    This might be what I end up doing.

    No, he didn’t. What is a Bb response ?


    Thank you for helping me. Your comments are very helpful and exactly what I am looking for to help me take the best decision for myself.
     
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  12. duncan

    duncan Senior Member (Voting Rights)

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    @Dechi , a C6 is a special type of ELISA. Your doctor may feel he cannot give you a WB unless you test positive first with an ELISA. Most doctors don't use the C6. But the C6 is FDA-approved, and if he won't give you a WB without a positive ELISA, the C6 ELISA may be a better mouse trap.

    The main issue here is you are sensitive to meds, so you don't want to do that needlessly for an extended period. I also am sensitive to abx. They screw me up big time. Maybe there is a compromise? Some doctors believe that a person can have Lyme and still test negative for it. One way they go about trying to find out if Lyme is lurking is doing a short course of abx, then test for Lyme. The theory is the abx kills or disrupts Bb enough for them to enter the blood stream and provoke an antibody response. If the patient tests positive after a short course meant to see if they've actually got Lyme, well, then that patient has some decisions to make with their doctor about treatment. If the patient tests negative after deliberately trying to elicit an immune response specific to Bb, it makes other decisions more clear.

    I'm not advising this, I'm just pointing out this is done in some Lyme endemic areas. It's certainly not a fool-proof process. You may wish to discuss with you doctor, though, if you think it appropriate.
     
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  13. Dechi

    Dechi Senior Member (Voting Rights)

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    I like that idea a lot, I might ask him about it ! Do you know what is meant by « short course » ? Is it 2 weeks, 4 weeks ?
     
  14. Rain

    Rain Senior Member (Voting Rights)

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    Long time antibiotics are one of the few things that have been able to quiet down some of my symptoms. Still, with the knowledge we have on microbiota today, I am 100% sure I would have given it a pass. @Dechi
     
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  15. duncan

    duncan Senior Member (Voting Rights)

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    It varies by doctor. It may have something to do with Lyme replication cycles, and the mechanism by which a given abx works. Certainly no longer than 4 weeks, but I suspect 2 would be good enough. I don't know though. I know I feel wickedly bad within one day of starting back on abx, so I know your concerns. See what your doctor thinks.
     
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  16. lycaena

    lycaena Senior Member (Voting Rights)

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    I took a lot of risky medication prescribed by "Lyme experts" included a malaria medication (Hydroxychloroquine) :( I really wouldn't do this again. You take the risks without the proven chance to get better. My two "Lyme doctors" were normal doctors (no privat ones), very nice people who believed me that I am ill when other doctors did not.

    Like @Jonathan Edwards said they can be wrong with diagnosis und treatment nevertheless. But I understand your desperation.

    I never got any better with antibiotics and other "Lyme treatments" but I was lucky to have no serious side effects. I also tried natural remedies which are also not proven but mostly quiet harmless.

    I had many tick bites und the western blot showed my immusystem had contact with borrelia. That doesn't have to mean that there is any living borrelia left to make me ill. But Lyme could have triggert my ME/CFS .. or not. So maybe the first two courses of antibiotics were more or less justified to try - in my case - , but not the several month long courses und not the malaria treatment.
     
    Last edited: Jul 28, 2019
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  17. Dechi

    Dechi Senior Member (Voting Rights)

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    Thank you for sharing !
     
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  18. strategist

    strategist Senior Member (Voting Rights)

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    My health permanently worsened as result. I'm not the only one. The side effects were horrific and I thought I would not survive a year. Allegedly some people are helped but I suspect that the positive outcomes are talked about much more than the negative outcomes due to human nature.

    I think it is easy to see that this approach must have some serious problems when considering that the number of patients on which it was tried must be numbering at least in the tens of thousands, likely even hundreds of thousands, and that nobody has formally published on it (to my knowledge). If this was something that worked more often than not I think there would be something amounting to convincing evidence showing that the benefits outweight the risks.

    Also, my reasoning prior to the treatment was the same as yours: the realization that I'm slowly declining and that something must be done, combined with a lack of understanding of how dangerous it is.
     
    Last edited: Jul 28, 2019
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  19. WillowJ

    WillowJ Senior Member (Voting Rights)

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    I understand that there are some issues with testing for Lyme, but I have never heard anyone else claim the effects could be delayed as long as 20 years. The usual thing I hear said is that it takes some weeks or a couple of months to show up. Maybe I am missing something, however.
     
    Last edited: Jul 29, 2019
  20. Dechi

    Dechi Senior Member (Voting Rights)

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    Well, I was surprised too by that statement. He says he’s seen all kind of different ways the illness appears. I did not think it could reactivate decades later. Still very unsure about that.
     
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