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  • First post, newly dx with Lyme... any advice greatly appreciated

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    Old 08-24-2013, 12:27 AM   #1
    jusdebbie
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    Angry First post, newly dx with Lyme... any advice greatly appreciated



    Im just posting my bio to get me out there. Hopefully you will have some insight. I need anything you can offer!

    Dx with Crohns in my early 20's. about 20 years ago. It was relatively under control with minor meds and occasional steroids til about 5 years ago. Since then its gotten progressively worse to the point that nothing but iv steroids at high doses and for long treatment periods helps (and my last bout last summer was an ungodly dose in the hospitals for almost 8 weeks. I feel like that was the devil to me physically and i have and will not ever come back. Ive been on everything imaginable from the simple pentax to 6mp, methotrexate, remicade, humira, cimzia, and some study infusions and shots. Since its worsening, it seems i now have many additional issues... Major joint pain, heat intolerance, insomnia, fatigue, nausea, muscle weakness, brain fog, shortness of breathe, hypothyroidism, active mono, and lyme (tho lyme had not yet been blood dx). I am seeing a homeopathic doc that dx me with crohns, hypothyroid, mono, lyme, pesticides, bacteria, metals, and then some! Ive been doing his "remedies" for 8 weeks and as he told me i got much sicker, with the diseases becoming even more active to cause my own immunity to react and fight them back to "cure" me. He uses auricular medicine. However, with my latest blood test showing the lyme, as well as c reactive protein high and other numbers off, my regular doc put me on doxy AND wants me to get in with an Infectious Disease Doc asap. In the 2 days ive been taking the doxy i feel even worse, which i didnt think was possible. Ive educated myself so much and i get why this is happening from the bacteria dying. In any case, I'm hoping and praying for relief and maybe even thinking that ive had lyme for up to a year and that is why i am a complete basket case in so many ways. I don't want to have to be considered disabled soon and thats the direction ive been headed. Im scheduled to go back to The Mayo Clinic in 2 weeks to do their fibromyalgia program. This has been set up since i was there in March for my Crohns. Now that i clearly have a positive lyme test, i will be seeing the fibro team, my GI, an Endocrinologist, a Rheumatologist, and now an Infectious Disease Doc. Any insight, suggestions, help, hope, opinions, and experiences would be GREATLY appreciated. This is a very lonely road and not having anyone get the full picture, unlike im sure everyone here will, makes me feel like i will find understanding finally in a support group. That in itself is super comforting

     
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    Old 08-24-2013, 06:14 AM   #2
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    Re: First post, newly dx with Lyme... any advice greatly appreciated

    Good Morning :

    Sorry to hear of your situation and hope this forum or others like it will help in finding a course of treatment for this ailment.
    I am also a newbie here and am looking for a doctor who is knowledgeable on the subject of Lyme, I too would also prefer to go the natural route. For some reason Docs who treat people for Lyme have to keep a low profile due to persecution from peers, what a shame because this just keeps people from getting much needed treatment. I have long term debilitating symptoms, and from day to day and month to month I never know which body part is going to act up. Basically I am homebound from all this. With no medical answers to go on. So if you find any info on treatment options please share them and I will do the same.

     
    Old 08-28-2013, 05:33 PM   #3
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    Re: First post, newly dx with Lyme... any advice greatly appreciated

    JusDebbie, I went to Mayo also. I told them of the mental issues I was having from the Lyme. they set me up for evaluation, and told me that I was border line retarded and, or, early onset alzheimers. The other thing they said, could be I partied too much in high school Holy cow, that was 30 some years ago.
    I also went to the infectious disease doctor beings I have something between my scalp and skull. It is hot to the touch, and it throws me off mentally. The infectious disease doctor listened, then said, Did you hit your head? I told her it had started 9 years prior...Other words she did not know and passed it off with a dumb answer.

    What I am trying to get at is Mayo is "not" a good place to go for Lyme treatment. I honestly wouldn't waste my time. Infectious disease doctors are not specialist in the disease or the co-infections. Even if you got one to treat you it most likely would not be the right protocol for Lyme.

    I have "one" doctor now, makes things so much easier, he treats viral, bacterial infections, he treats thyroid, he is a Rheumatologist.

    He has his own practice and treats Fibromyalgia and chronic fatigue by looking for each individuals problem. could be bacterial, viral, heavy metals. By getting rid of the problem it lessens the pain and other physical problems we get from these infections/heavy metals.

    Fibro and C.F.S. is not a one size fits all. And there are ways of getting better besides taking antidepressants and other meds G.P's put us on for the run of the mill treatment. I had one doctor eons of years ago, he had me on 14 prescriptions at ONE time. They did me no good and made me worse. That was before I figured out, he wanted to give me a label for something. But did not want to even look into Lyme. good lord I had been bitten by ticks then got sick. ugh!

    I was thinking you could of had the borrelia bacteria (lyme) all along, and it re-activated itself. Especially being on steroids. Steriods are the worse thing any one can do that has Lyme and co-infections. They lower the immune system and allow the bacteria to create more havoc in us. Been there done that before I understood what was going on.

    also taking the antibiotic, you will want to take probiotics from the health food store. Put good bacteria back into your colon. Having chrons and taking a antibiotic you could have more problems without a good Lyme Literate Medical Doctor, (LLMD) helping you through this.

    From where you are sitting look for a Lyme support group in your city, county, state. There should be a contact name, see if you can request a LLMD from them. You may have to travel, and most of us have to pay out of pocket. Beings many do not take insurance. It is your life and your health.

    It's a hard road to travel, but you can bet all of us on this board totally understand what you are going through.
    Hope you find your answers soon!

    Jodie

     
    Old 08-29-2013, 07:24 AM   #4
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    Re: First post, newly dx with Lyme... any advice greatly appreciated

    Quote:
    Originally Posted by jojo View Post
    JusDebbie, I went to Mayo also. I told them of the mental issues I was having from the Lyme. they set me up for evaluation, and told me that I was border line retarded and, or, early onset alzheimers. The other thing they said, could be I partied too much in high school Holy cow, that was 30 some years ago.
    I also went to the infectious disease doctor beings I have something between my scalp and skull. It is hot to the touch, and it throws me off mentally. The infectious disease doctor listened, then said, Did you hit your head? I told her it had started 9 years prior...Other words she did not know and passed it off with a dumb answer.

    What I am trying to get at is Mayo is "not" a good place to go for Lyme treatment. I honestly wouldn't waste my time. Infectious disease doctors are not specialist in the disease or the co-infections. Even if you got one to treat you it most likely would not be the right protocol for Lyme.

    I have "one" doctor now, makes things so much easier, he treats viral, bacterial infections, he treats thyroid, he is a Rheumatologist.

    He has his own practice and treats Fibromyalgia and chronic fatigue by looking for each individuals problem. could be bacterial, viral, heavy metals. By getting rid of the problem it lessens the pain and other physical problems we get from these infections/heavy metals.

    Fibro and C.F.S. is not a one size fits all. And there are ways of getting better besides taking antidepressants and other meds G.P's put us on for the run of the mill treatment. I had one doctor eons of years ago, he had me on 14 prescriptions at ONE time. They did me no good and made me worse. That was before I figured out, he wanted to give me a label for something. But did not want to even look into Lyme. good lord I had been bitten by ticks then got sick. ugh!

    I was thinking you could of had the borrelia bacteria (lyme) all along, and it re-activated itself. Especially being on steroids. Steriods are the worse thing any one can do that has Lyme and co-infections. They lower the immune system and allow the bacteria to create more havoc in us. Been there done that before I understood what was going on.

    also taking the antibiotic, you will want to take probiotics from the health food store. Put good bacteria back into your colon. Having chrons and taking a antibiotic you could have more problems without a good Lyme Literate Medical Doctor, (LLMD) helping you through this.

    From where you are sitting look for a Lyme support group in your city, county, state. There should be a contact name, see if you can request a LLMD from them. You may have to travel, and most of us have to pay out of pocket. Beings many do not take insurance. It is your life and your health.

    It's a hard road to travel, but you can bet all of us on this board totally understand what you are going through.
    Hope you find your answers soon!

    Jodie

    Hi Jodie and thanks so much for replying. I know the deal about Mayo... Ive been there before and i am not expecting to get the answer from them. I was scheduled to do this back in March when i couldnt stay any longer from a crohns workup, then was scheduled in May but i was too sick to go, so it was rescheduled for Sept 5th. In the interim, i was dx with Lyme by my local GI. I have an apt Friday with someone he suggested but ive been researching all around all these forums for a somewhat local LLMD. I have a few names Jemsek, Harbor, Shor, Horowitz, and Malik. Today i plan to call them and set something up. I can NOT believe your treatment at Mayo and if i get setup with someone that goes that route, i will just walk out! You guys have given me such great info and im not going to waste my time hearing them poo poo what i have when i know i have something and feel like im dying. That must have been so frustrating for you. I will report back on how that goes! I do also see an alternative medicine doctor, i started the end of May. I am following his treatment plan and using 18 "remedies" that are sprays to help boost my own immunity to fight off all the conditions i have. I also have had about 6 needles in my ear over the course for celiac and pain. They stay in about 3 weeks and are to "cure" the problem. According to him i have crohns, celiac, disease, lyme, hypothyroid, mono, metals, parasites, and so on. I have not had any relief yet from these treatments tho he says that i am improving by his testing methods (auricular medicine) but it may take me a long time to "feel" better. As for what you say about the steroids, i too believe they were what put me over the edge and to what i feel like is the point of no return. Everything got worse after that however, its been steadily getting worse and worse almost like compounding. When i think it cant get worse, it does! Its the craziest thing ever. I also have been on many different chemo drugs for my crohns so im sure they also contributed to any co-infection wreaking havoc on me. I am just learning about these co-infections but it all sure makes total sense to me. Its so frustrating that very few doctors even believe in all this, especially when i feel like i am such living, breathing proof and there are many others out there just like me. It blows my mind! What is their purpose to denying the reality of it? Thanks again for your thorough reply, and i will keep you updated.

    Debbie

     
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