CFS after treating Lyme?

Discussion in 'Lyme Disease Archives' started by LISALOO, Jun 21, 2010.

  1. LISALOO

    LISALOO New Member

    I'm going to be starting lyme treatments soon.

    Couple of questions

    - Fatigue and really post-external malaise are my main issues. Will I still have CFS after Lyme treatment?

    - Is it really feasible after 7 years of illness to think that I can get back to seminormalcy of health? I mean 95%?
  2. victoria

    victoria New Member

    Yes some to get back their lives rather quickly, but slower for others, some continue to have problems but usually at least are 'better'. Not aware of statistics on it, don't think there are any due to the political controversy on it.

    Actually, most doctors feel you never quite get rid of it, if not treated initially; and generally the longer one has had it, the longer it takes to treat; and most say length of illness may have a bearing on what degree you recover to - but regardless, it will be a matter of keeping your immune system functioning so whatever is left is kept beaten into submission.

    Also, so much depends on what co-infections you might have, not only from ticks but whatever else you may have gotten before or after, plus just your own physical/genetic makeup.

    But treating it should give you a lot of your health back. It's a shame people don't come back to post updates. I myself haven't been the most consistent in treating... I'm not as bad as some. My son has regained a lot, considering where he started from - his symptoms initially would've been called CFS and then Fibro if I hadn't known about Lyme.

    Hope that helps... I look at it as more of a question about, "How can you not treat it?". as in IMHO, any % gain is helpful.

    How are you going to treat it? Abx, or alternatively?

    all the best,
    Victoria


  3. LISALOO

    LISALOO New Member

    I'm deciding if I want to treat it, If I'm left with CFS that will continue to get worse, then who cares about Lyme, that's my thought.

    WHy suffer through herxing from Lyme for years then have CFS still getting worse.
  4. victoria

    victoria New Member

    1) There is such a huge overlap in symptoms between CFIDS & Lyme, it may take care of most or all of them if you're treated. Nobody really knows what CFIDS really is due to, after all. So if you know you have Lyme, it's a good place to start.

    Not that all your symptoms are necessarily due to Lyme all by itself - but they may be worsened by the Lyme on top of whatever else may be causing them. Many find out most or all of CFIDS is from one or another or combination of 'bugs'. The meds used for Lyme have a BIG overlap in killing other likely suspects, such as mycoplasma, bartonella, etc.m so from that standpoint alone (IMHO) it's worthwhile to treat.

    As well,

    2) if you don't treat it, the Lyme will continue to worsen and just make you even sicker over time.

    It's not fun to herx, no; but the payoff is when you're done, you CAN feel the difference.

    I hope that whatever doctor you see works with a protocol that allows time in between pulses of abx, it gives your immune system - and you - time to recover AND everyone I know who has done it that way feels better during that time 'off'.

    Hope I'm making sense, having an 'off' day... but really, I urge and hope you do get treated. Often after starting treatment, it can become obvious to a skilled LLMD what else you may or many not have depending on symptoms that remain.

    best,
    Victoria





  5. amomwithsickkids

    amomwithsickkids New Member

    I agree with everything Victoria said. Surely if you know you have Lyme, it must be treated. If it isn't treated it will get worse, and the symptoms of Lyme and CFS are the same. IMO, there is a subset of people whose CFS is caused by tick-borne disease. It's possible you fall into that category since you know you have Lyme.

    It's also very important to build up your immune system and watch your diet. And, what I recently found out is that mold can be a major issue for some. Mold illness also has some of the same symptoms of tick-borne illness and CFS. There was a person that posted on that a lot...I think it was slayadragon?

    I know you are frustrated, and understandably so. But you have to try whatever you can to get well, however long the road might be. If you have Lyme, you need to be treated. Just my two cents, FWIW. I hope that you find what works for you. Good luck to you on the journey to wellness.
  6. Nanie46

    Nanie46 Moderator

    Hi,

    I agree with Victoria also. Treat the lyme. You probably have coinfections also...many do.

    Babesia can cause extreme fatigue and post exertional malaise, so I would strongly consider that you may have that one.

    Do not have expectations with time limits because everyone's case is different. I had lyme for 21 years before diagnosis. I have been treating for 16 months so far. I am getting better but it takes time.

    I figure time is going to pass anyway. As I got older, in my 40's, my symptoms got much worse. I wish I had known I had lyme years ago and had treated it before I was even more sick.

    Expect to have times where you feel worse before you feel better. Herxing is part of the process.

    It is possible to regain a normal life. It is really about quality of life. I am willing to treat for a long time if necessary to be free of these symptoms.

    Later, if I have to treat off and on if symptoms arise again, then I will. It will be worth it to feel normal.

    You can do this!!

    I am here and on lymenet.org (Dekrator48) to help support you on your journey to better health.

  7. LISALOO

    LISALOO New Member

    I also posted to Lymenet.org and so many people said they still had CFS and it was teh same or worse after Lyme.

    I know according to tests that I have Lyme, But my biggest symtom is fatigue, I really don't have pain, etc (more of the lyme specific traits), so I feel even more hopeless.
  8. victoria

    victoria New Member

    "so many people said they still had CFS and it was teh same or worse after Lyme"

    Did they say what benefits or gains they did accomplish? Also wonder how many felt that some symptoms relief was worth it. Sometimes those outweigh the fatigue. For instance, if one is experiencing migrating joint & muscle pain and that was reduced/disappeared, it would (to me) be relief well worth the treatment.

    Also there is a significant percentage of people who have had a significant improvement in all areas... while there are a number who of course don't seem to get anywhere.

    I think it's impossible to predict how you will respond, as it seems to depend highly on one's genetic makeup and also what other infections are present....

    My biggest fear in NOT doing anything is that it will just get worse. IE, if it remained the same, I would see that as some kind of victory that at least it was 'stopped'.

    But that's a decision we all have to make for ourselves obviously. Good luck in whatever you decide to do, or not do.

    All the best,
    Victoria
  9. LISALOO

    LISALOO New Member

    I just don't feel like lyme is my issue, I feel like 90% of my issues are fatigue, and post-external fatigue, I don't have all the pain like lyme people.
  10. victoria

    victoria New Member

    but not all of us have pain.

    I don't, fwiw....

    take care,
    Victoria
  11. LISALOO

    LISALOO New Member

    have you improved with treatment?

    Thanks!
    [This Message was Edited on 07/08/2010]
  12. victoria

    victoria New Member

    I have been more "off" than "on" a protocol, but back on it now as I could feel myself going backwards. I have had some significant permanent gains - no hip pain anymore, broke the back of 24/7 sinusitis headaches to approximately an average of 1X every 2 - 3 weeks, had to wean off my thyroid med as I started to get hyperthyroid symptoms, and did have more energy after a year. (I was and am doing the Marshall Protocol as it's working for me.)

    My son was sleeping 16+ hours/day, extremely fatigued, anxiety/depression, most of his body was in pain with migrating muscle & joint aches including carpal tunnel in both wrists, parasthesias in arms/hands & legs/feet, couldn't remember or understand new material much so had to drop out of HS as it was totally frustrating (in 2 years he didn't even have enough credits to say he'd done 1 year of HS).

    He also had lost 10 lbs, had way below normal BP and pulse, all at age 17. Our internist said all the 'regular' labs were normal; altho the doc agreed he was obviously very ill, he had no clue where to send him or what to do.

    Luckily I'd been reading about Lyme and already started the MP and recognized his symptoms, took him to the nearest LLMD. He was so positive, he had all 5 bands that the CDC looks for surveillance/tracking 2X 6 months apart. From symptoms it was apparent he had babesia and bartonella as well.

    He did 3.5 years of oral abx (tho IV was recommended, it was up to him as he was nearly 18 anyway). Pain has mostly remitted tho he still gets odd injuries and pains, memory and cognition is better but still a problem, BP and pulse are normal, and has gained weight as well as grew another inch.

    He is disabled, but where he is now compared to where he was, he'd do it all again. (As I would and am.) When he saw the extended trailer for 'Under Our Skin', he was extremely grateful for our standing by him and financing his treatment.

    He will likely have to do something more at some point to keep the gains. He has used MMS (controversial, another topic) and feels it has helped, tho likely it has helped with other unknown co-infections.

    all the best,
    Victoria
  13. victoria

    victoria New Member

    I am convinced if my son had been a female, he would've initially gotten a dx of CFIDS and then FM... or worse, purely psychological due to the depression/anxiety.

    (The cognitive stuff happened along with fatigue/unrefreshed sleep first, we can backdate symptoms to when he was 13. The weight loss, PEM, pain, low BP and pulse started when he was 16--17. I was never dx'd with FM even tho I have the 'tender spots', just do not have the body pain.)


    [This Message was Edited on 07/08/2010]
  14. Misfit101

    Misfit101 New Member

    Lisaloo...i dont post much here anymore but i still read the lyme threads and HAD to post to you. I have likely been sick with lyme for years. I am recdntly dx'ed. What sent me to the dr was pain such as i had never experienced in my life. My point is tho ive had this for years i didnt have the pain initially. But oh boy did it come! Plz get the treatment...it could save you from future misery. I would suggest that you read read read all that you can about lyme. Tons of info out there. But PLEASE dont put off getting treatment. Nip this in the bud now. I wish you the best!
  15. maps1

    maps1 Member

    I like many others here belonged to the cfs thread, my lyme was diagnosed April 2009.

    It makes me so sad that you have to deal with this but I just wanted to mention something.

    If you have borrelia (sp) in your body and it is not treated it will continue to eat into all your organs including your heart, brain, bones etc. Like any other bacteria it does not go away by itself.

    I know we get so worn out that better the devil we know than the one we don't.

    I no longer have the severe brain fog or the fatigue but the damage to my body is done and is not likely to be reversed.

    I wish you good luck in your decision, if you would like any more information from me please pm me.

    regards
    maps
  16. Daisys

    Daisys Member

    I think the latest I got bit was 1970. In 1976 I got a terrible flu, and then was practically bedridden for years, but without any other symptoms. It was the fatigue and exercise intolerance that later was Dx'd as CFS. I gradually got better until about 5 years later, I was living an "almost normal" life, having to be careful not to overdo it, but very busy, and keeping up with most of my friends.

    In 1986, I had a physical trauma, and relapsed. After that, I never really slept or was alert: I had constant alpha waves (light sleep) that is connected to FM.

    In the early 90's, I was diagnosed with FM, but didn't have enough pain to need to take anything for it. The worst was the insomnia. I didn't get enough delta wave sleep.

    I was doing research all along, and trying different things, keeping the things that helped, and was OK, except for the unrelenting fatigue, until menopause (another trauma). Then I had a sudden increase of symptoms and intractible pain (without treatment, people die from that kind of pain). That's when I finally found a lyme literate doctor, and was treated for 2 1/2 years.

    Several months ago, I went off treatment and into maintenance with Samento/Cumanda and grapefruit seed extract. The remaining symptoms mostly kept getting better. The only symptoms that didn't go away at that time were the insomnia, and the fatigue. But, just lately, I have had more energy. I've been working with candida issues, and it's made a difference in my energy levels. I believe the insomnia is permanent, but for a few weeks now, I've been as active as before I had this last relapse.

    If I could've had access to a LLMD all those years ago, with the first symptoms showing up, I would've jumped at the chance to get help, knowing what I do now.

    Oh, one thing I wanted to say about illness sites in general. The ones who get well, get busy, and you don't hear from most of them again. I saw one person on a lyme site who stayed away for about 5 years and then relapsed, and came back. So, basically, what you get at these sites are people looking for information and encouragement, rather than the success stories.
  17. amomwithsickkids

    amomwithsickkids New Member

    If you tested + for Lyme, then please consider that Lyme could very well be your "issue" and that you ought to consider consulting a LLMD.

    Post-exertional fatigue and overwhelming fatigue could be a symptom of LD. You don't necessarily have to have pain to have LD.

    BTW, have you had a tilt-table test to rule out POTS? That can cause fatigue/dizziness as well. It can be controlled with florinef.

  18. LISALOO

    LISALOO New Member

    thanks everyone for your thoughts. Still thinking about what I'm going to do.