Just looking for some more advice

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I've been back on this Doxycycline 2 days after having 8 days off the Meds and I'm getting worse each day, I felt horrendous last time I was on it, felt the same off it, and now I feel even worse now I'm back on, so all in all I'm on my 5th week and haven't noticed a single bit of improvement, I started the Meds 10 days after noticing two rashes that spread, really at my wits end here, feel like I'm gunna drop dead, is it normal to feel this bad ?

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  • Posted

    I have had the pressure on one side of head. Went to Er. Had ct ,  came back good..   now. I have left side rib pain...   had a cardiac work up to make sure all is well there,  will find out. Couple weeks at appt on that cause chest feels heavy no pain , I get anxiety also any tips on how to stop the anxiety and. Does anyone's else have chest issues...

    • Posted

      Hi ya mate just seen your reply, yeah I've had the anxiety for years but I've had complete control of it in the main, I done a CBT course years ago all about turning negativity into positivity and being in control of your thoughts, but I have to admit my anxiety levels are through the roof with all this going on,

      I feel a bit better now than earlier on, the doctor I spoke to said it is possible to be Lyme but my bloods have been sent to serology (lab) but he said keep taking the Doxycycline as it may take months to recover, just hope this dizzy drunk/drugged feeling goes,

      Up to now I haven't had much pain, and I'm just praying it stays that way, keep us informed how your doing and hopefully we can keep our motivation up 👍

    • Posted


      to ALL those.

       but chest xray clear, heart good,  bloods all normal etc etc.

      This is what Lyme does. It affects all parts of the body but hides in the cells and does strange things so just get rid of it with the meds  and a strengthened immune system.

      Anxiety comes with the disease. It's the fight or flight thing. We don't know what's making us feel so wretched. 

      You can't fly from it  so you fight it with all you've got because it's too awful a thing to live with..

      You worry about everything connected with it. It's natural.

      Lyme mimics other diseases so medics rule all those out with blood tests, c scans etc and are left with = nothing because they haven't yet got the sophisticated testing know how .

      We just want answers and to be made well again.

      Being over anxious is genetic. Blame your parents/ g parents.

      It makes life harder  for us than it is for the happy go lucky souls.

      Focus on other things. Music is good . Some try meditation. Others  pray..

      Deep breathing is good. warmth, massage, acupuncture helps some. Sun is good. 

      Find humour in things if you can.

      There is no "I can't do it" You can do anything.

      We have huge inner strength. It is there when we most need it.

      Focus on getting well.

      All the pains and strangeness we feel is part of the illness. 

      If need be get some medication that dulls the.  anxiety.

      Keep your mind occupied. write or sing. get some sun if you can . And sleep. You need lots of sleep.

    • Posted

      I have trouble sleeping. I wake up all the time... I'm always tired 

  • Posted

    I'd forgotten about teh vit C until Vee mentioned it.

    I take several grammes daily plus extra salt. and various vits and herbal stuff 

    The green juices are excellent too. 

    are you still waiting to be seen Dave>

    and Lijom?

    Dave i used to cry when i read what folks were going through but now  there are no more tears(waste of water).

    I  just have   hope because i'm sure this thing can be beat and evn if long term there are still ways to help ourselves and keep the spirochete levels low so one can live with it.

    BUT better by far to discover and treat it early as then there is every hope of  cure. 

    One day the Health Minister will realise just how many lives are affected by Lyme  and  send out new directives so patients get the treatment they need.

    Let us know how things go..


    • Posted

      Yeah I'll definitely keep you informed, thanks very much again and I hope you have a good week, keep drinking that water 😊

    • Posted

      I am being treated by a rheumatologist right now..  live in Pa. and  have not found a llmd that excepts. Insurance 

      with  a 31 day treatment of. Doxy.  Last time a year ago it was a. 21 day of doxy... 


    • Posted

      What type of diet is best recommended. I usually try to stay low sugar...  low carbs
    • Posted


      If you are being treated by a rheumatologist then be guided by him.

      was rheumatoid arthritis confirmed?

      Does the rheumatologist accept that you have Lyme.

      Have you been Lyme  tested and what co infections were found?

      For whatever reason lyme Docs do not accept medical insurance. in USA (others have said this) and those of middle and low incomes cannot afford treatment. In which case just get affordable remedies .

      PA is a high risk area. 2014 there were over 7000 cases reported. How many unreported?so maybe that;s why insurers won't  take it on. Too costly.

      21days of Doxy given when bite and rash appear usually ensure full recovery.  Sometimes it needs to be repeated.

      Late Lyme is harder and takes longer to cure.

      Low carbs and low sugar is good as is lots of vegetables including celery, onion greens, onions and salad greens. Potatoes rarely.. Have  organic meat if you can and fish.

      Burgers should have no added cereal just ground beef, onionsand herbfor flavour and a beaten egg to bind. Sage, thyme, parsley and rosemary are all useful. Eggs, any ways are good.

      Find what suits you. Have celery and avocados. Chillis are goodl too.

      Cut out dairy if you can and no coffee. take vits and probotics. 

      See what suits you best.  use coconut oil.

      Nuts (almonds particularly) and seeds, pumpkin, hemp, 

      Don't have processed food

      Food is cheaper in US than in Uk and you have a huge variety.

      Sleep. You need it so ask for sleeping pills if need be. 

      Magnesium pill  at night aids sleep.

      Nap when you feel like it.

      Don't get anxious about not sleeping. Just do something positive. Watch a film or play computer chess.

      I;ve seen more dawns these last two years than in all the years gone before. 

      Anxiety prevents sleep as does pain.Alleviate both somehow and you will sleep..



    • Posted

      No rheumatoid arthritis was not confirmed I see her tomorrow,

      she does acknowledge I have Lyme and is treating it. How are co infections  confirmed by what type of test I had the Lyme titter and western blot , how is coconut oil used just for cooking with..  

      i was  told cheese was ok.. so that should be stopped....

      do you eat bread when I do it's  wheat bread...  fries I have sweet potatoes ones

      thanks for all the info it helps 


    • Posted

      Also. I take my doxy. With milk just enough to get it down.i get sick if I take it with water.   Also eat a bit beforehand is it true dairy  affects the doxy. I read that online somewhere. Ty
    • Posted

      Tthe co infections are the other nasties such as Borellia Babesia and  others(forgotten the names for the moment)

      Google lyme co infectons.

      The German Lyme test will test for several of these.

      Each causes different symptoms but all part of Lyme

      You have milk if it helps the Doxy go down. have cheese if you want.

       but cut down on the dairy and the cheese.

      Find what suits you. We all are different.

      It's just that to get really well you need to eat good organic  stuff  that will boost your immune system.

      I  got a book on healing Lyme and it suggests sticking to a rigorous non dairy/ non carbs/ non sugar diet. ..Since most fruits are high sugar they only advise blueberries, rhubarb and lemons.

      I eat raspberries and strawberries and the occasional apple.

       Bread, potatoes Cheese and chocolate I miss the most. I yearn for toast and marmalade. Sometimes I cheat!

      Bread and potatoes were a staple diet so it's hard to do without them..

      Good no rheumatoid arthritis was found, Do you have pain in joints?

      I don't know if dairy affects the Doxy. I will find out but  maybe it does.

      there are other milks coconut milk/ almond milk/ oat milketc  Not the same I know.

      Take only the minimum dairy and see if it helps.

      Coconut oil is good. Google its uses. You can use it for frying. I used to have it in porage but no longer have porage(carbs).

      Bread has yeast and yeast is not good for the fungal infections that come along with Lyme(neither is sugar).

      I'm glad your Doctor accepts you have Lyme and is treating you.

      You are really lucky believe me. So many get no help at all from their Health care providers.




    • Posted

      You are right.

      It is not advisable to have dairy foods with Doxy a sit affects  it.

      Aslo no vit pills taht have calcium or magnesium in.

      Try a non dairy substitute milk(one that does not have added calcium) when swallowing your Doxy. . Could you have it with home made  soup I wonder? 

    • Posted

      So almond. Milk. Would Be ok. Or. coconut 

      I do have pain in joints but different all. The time. 

      This week. It's the neck , left side  ribs



    • Posted


      Most of us have those pains too so all part of the same.

      Almond milk should be ok. I have it but am not keen.

      There is also coconut milk (don't get the calcium added one). and various others. Hemp milk too is fine. Hemp seeds are good against Lyme. (Hemp cream helps with sore feet)

      None compare  to dairy because it;s what we;re used to but if any help you swallow theDoxy then that's the main thing.

    • Posted

      Yes. Ty.  I eat dry cereal. Cheerios . Gluten free just as a snack. Handfuls. What other kind. Is good

      i really appreciate all your knowledge..

    • Posted


      Sorry but cereal is carbs.

      Nuts are good. vegetable sticks/ hummus/ soups and seeds are good.

      You can make little crackers from olive oil/ assorted seeds(sesame/ pumpkin/ sunflower/ linseed and seasoning. and a llittle cheese added. Good for snacking.

      Check what's in gluten free stuff- often it's overpriced.

      Not even sure if cornflakes are ok.

      I have only learnt through trying to get myself well and  taking bits of knowledge from others who have tried different things  and who  have shared their experiences. And there is research going on in Us and Europe.

      I know nothing in comparison to others but  a lot of what I've read seems to make sense

      You have to do what you can to make life manageable.. even on limited budgets.

      And I do find that sweet things set me off itching again.

      The aches and pains  just do their own thing. One day unbearable and the next not to bad. it is destroying all my joints.

      SO if you getting well means a few changes in diet now then it is well worth it.

      Wheat and dairy do cause a lot of digestive problems for many people.

      when you are wll again you can go back on eating what you want but for now you need to eat only natural, unprocessed food .

      Some can eat strawberries  others no. some eat 


    • Posted

      Ty..   how long. Do you have to take antibiotics , ,if you still feel bad after  first course they may prescribe more?.....I go to doc s tomorrow so I will have to ask. Ty
    • Posted

      Hi Marie, just a little update how I've been getting on, I'm coming round/swaying towards the thinking it's this Doxycycline giving me my symptoms, my symptoms haven't changed in 8 weeks, pain hasn't really been an issue other than very minimal shooting pains but they could be once/twice a day for a few seconds, my anxiety levels have continued to climb since the day I started this med, but the dizziness/lethargic feeling comes and goes at different stages throughout the day, my test results have been sent to Porton Down and should be back next week, I'm booked into a private hospital in Hemel Hempstead on Tuesday, if the results come back negative and the private doctor says he doesn't think it's Lyme I'm gunna have to stop using this Doxy, I've read a load of posts on the net where people have been taking it for achne and had dizzy spells/ off balance and really bad anxiety for weeks after, two main things I can relate to, add to that if it was Lyme I'm pretty sure the Meds would have taken the edge of the infection by now yet I seem to be getting worse, it really is a mind F### the whole thing 😫

    • Posted

      Weren't you in A and E when you last posted?

      What happened with that. 

      Possibly it's just die off that is causing you problems.  Wait and see what happens.

      It's a very strong antibiotic- too strong for children- so I doubt it's needed for acne. No wonder the body would react.

      Yes the whole thing - whatever it is is as you say a mind**********. and that is the reason so many get a "depression" or "anxiety disorder" diagnosis.

      Maybe you have had too high a dose. Not all are the same body weight.

      And the calcium in dairy and cheese interacts with it which is why you keep off dairy.

      The bacteria multiply. They have to be got rid of in all stages of developement as they change.  Once they break through the cell walls they remain undetected there yet still cause the damage.

      Cancer treatments cause dreadful reactions. Those patients just soldier on in the hope all the side effects are worth it.

      maybe it's the same with many nasty diseases.

      Porton down results may come back negative. They often do yet these same folk have Lyme.

      If you can afford Hemel Hempstead clinic then you can afford, perhaps, the £450 needed for the German testing. This is more comprehensive and conclusive.

      They send a courier for the blood which the nurse at your Dr's practice will take(for a small fee) and all directions come with it . then you get results in day or two.

      So you have choices.

      IF you have Lyme  then caught early and treated it will be cured.

      If you have it and it's not treated then you will suffer for years and all the tests/scans/Mri's will not find it.

      But a post mortem will.

      I'm having a PM that;s for sure.

      As for the anxiety. I'm afraid it goes with the disease and the not knowing. This makes acceptance hard and increases the anxiety levels.

      Go with the flow.

      Do not worry. 

      There are other things besides Doxy that can help. Cannaboil is good for Lyme if you can afford it. So is wild rosemary and that is as cheap as chips(maybe not Harry Ramsdens).

      I'm going to live to taste them one day when I get all my new joints!(and pigs might fly!)

      And  Good Luck with Hemel. Hope they can sort things for you. Be wary.

      Remember you need lots of sleep.

      ps you had symptoms before taking Doxy!


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