In treatment for six months, very slowly increased doses to where I am now - Azithromycin 250 mg twice a day and Rifampin 300 mg in the am and 150 in the pm. LLMD has added Tindamax which I have not yet started. Afraid to.
At one point, I was noticing improvement all the way around and feeling better. But about two months ago I started to notice some of my old symptoms slowly returning.
Now the OCD, anxiety and depression is overwhelming again. I feel hopeless and confused and frightened. I despise who I have become. My character has changed and I feel so weak. It is becoming very hard to find a reason to go on. Life isn't enjoyable anymore. And all I see ahead is a train coming right at me.
I don't know if the disease is progressing, if the meds stopped working or if this is herxing. My LLMD in our appointment about two weeks ago said I am right about where I should be and that the symptoms come and go and that's normal.
My LLMD (in DC) wanted me to get a primary phycisian where I am at to monitor other things about me such as iron deficiency anemia. As most of you I have been to many doctors here and they all adamantly deny I have lyme and instead attribute my symptoms to neuro syphillis because my FTA ABS test was positive. My RPR / VDRL is negative. I tried explaining that my research says that Lyme can cause a false positive on the FTA ABS, but they would not listen to me.
Anyway long story short, I went to an internal medicine doctor on Friday. He too said my symptoms sound more like syphillis than lyme and that he has never heard lyme causing a false positive FTA ABS and that I am choosing which disease to have. Then I asked him about my pressure which tends to run low - around 80's and 90's over 60's and 50's. He asked how do I know and I told him because I check it at home. He told me then don't check it. It's fine. Sent out for rountine annual blood work and said see you in a year.
I feel so isolated and alone. The sadness is unbearable and I can't take anymore. There is a desperation deep inside my soul that I can't quiet and my mind won't shut the &*$@#@ up.
I take my hat off to all the people on this board that have been facing the effects of this disease from hell for much longer than I and who are much sicker than me. May God truly bless you and restore your health. How the little kids get through it I don't know.
People tell me to get a grip and have faith in God and be strong. I am trying, but.....
Posts: 138 | From US Virgin Islands | Registered: May 2012
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Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Prayerworks. I too was worse at 6 months in. Not sure I was worse, but it seemed a lot harder after having some good spells. This is a horrid disease with some ups and a lot of downs. The drugs also have side effects that can mess with your moods, your energy and your pain. I found keeping a journal really helped me see a pattern and that made me deal with it better. For instance I herxed at the end of the month into the next month. So when I started to see those herxes get shorter and less severe, it helped me get through. Also knowing to expect a crash helped too (kind of like getting emotional before periods... Once you figure it out you can laugh at it)
When I was first dx'd I asked my Pcp. If it could be syphilus... She told me it didn't make a difference as the same abx would work. Not sure if she really knew, but I do seem to be doing better in any case. It was at my year mark that I started seeing more gains (at 6 months I felt horrid)
Have you checked side effects of the drugs your on? Flagyl can cause depression. Biaxin, Zythro can cause anxiety. Knowing is good... You can either deal with it better understanding it is a side effect or see if a different drug would work. But feeling dark dark is something you should share with your llmd. Perhaps an antidepressant could help. It did me, with the pain too.
I'm glad you came here for support. Your not alone.
Posts: 1728 | From USA | Registered: May 2011
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posted
I hope you will get some relief from all of this soon. It is a horrible disease to get through!
That is a lot of Rifampin.. or would be for me. I'm sure it's stirring things up in that brain!
Does your LLMD allow you to take a break for a day or two when the going gets bad?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Dearest prayerworks,
I am praying for you right now. God hears our cries for help. He loves you with an everlasting love, and He has a good plan for your life.
You will get better. I remember when I had such horrible fatigue, insomnia and brain fog. I remember when it felt like I had a never ending 4 inch drill bit drilling through the base of my skull and coming out my mouth. It got better.
Please go to www.KLove.com and scroll over the heading "Music Room", then click on "Listen Online". The music and the hosts that chat in between songs are so positive and uplifting.
Scroll down and scroll through the dozens of broadcasts that are available to watch, covering many helpful topics. I find these shows to be extremely helpful and encouraging.
Please join us anytime on the God Thought thread in General Support, where we find support through our faith in God.
I have found that if I surround myself constantly with encouraging, upliting and positive music, books, tv shows, Bible reading, etc, that it really helps me cope with all that Lyme and life throws at me.
Praying for you to be encouraged, find hope and to recover from your illness.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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RDaywillcome
Frequent Contributor (1K+ posts)
Member # 21454
posted
It will pass! Please stay strong! I know you can do it! Keep telling yourself, this will pass. Tomorrow is another DAY! We are here for you.
Posts: 1738 | From over the rainbow | Registered: Jul 2009
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I am very sorry things are so tough right now. We definitely understand. I agree about taking a break from meds so things can let up some. I suggest contacting your doctor about this before adding Tindamax.
Seeing an ignorant doctor does not help! I live in a state where "Lyme does not exist" (ha-ha!), and even so I saw a doctor years ago who knew that Lyme can cause a positive Syphillis test.
I would definitely find another primary care doctor. Even if this doctor does not understand Lyme, he does not need to be so arrogant and unkind. You are paying him! Do you have support groups in your area? Maybe you could ask for recommendations.
Maybe it would help if you spoke with a therapist who helps people who have chronic diseases?
Symptoms can be so overwhelming at times. Know that it is the symptoms, not you.
Posts: 4682 | Registered: Oct 2000
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posted
Hi everybody. Thank you so much for your support. Last night I was really down, but reading your posts encouraged me.
I don't know if I can take a few days off from the meds because I keep reading where Rifampin is not one to start and stop otherwise it can become resistant.
I will definitely try the Klove music room. I already view Joyce Meyers as I absolutely love her ministry. And I will go on over to God Thoughts in General Support.
We don't have a support group for lyme here, but I do go to a psychologist once a month.
I do keep a daily log of symptoms, what I eat, blood pressure, bm, and meds I take, but I can't seem to find much of a pattern. It does seem to get worse the week before my period, but there seems to be a consistent experiencing of symptoms throughout. I thought once I started meds I would feel good and then herx for a few days and then go a few weeks of feeling good again. But maybe I misunderstood. I don't know what is normal or to be expected.
But I do thank you for being there for me yesterday. Please know that I carry you all in my thoughts and prayers.
My tindamax pills are 500 mgs. My LLMD said to start slow. Should I start at 1/4 of the pill or 1/2? How did you all start Tindamax?
Posts: 138 | From US Virgin Islands | Registered: May 2012
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I've been there. I knw I'm not all the way well, I can get there again. Sometimes it's minute at a time. Good thoughts 2 u.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Azithromycin caused me horrible mood swings and rages. It all stop the day after I stopped that med.
Now, I'm not saying for you to stop, I'm just saying that for me some antibiotics caused emotional reactions that were unbearable and did not improve, but got worse.
I had to find the right stuff that worked for my body. Listen to your gut. Not everything is a herx.
If it's purely psychological, then that needs to be addressed.
Keep searching, the right answer for you is out there.
Posts: 2839 | From California | Registered: Jul 2012
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Prayer works...I just started crying by your 3rd word.
This is hard to go through..Have you been ill long? I know you said treated, but sick.
Signs that came and went for a while? ..
I will be praying for you..
Your right ,in that Rifampin shouldn't stop ,start..
Sounds like you have the 150mg, orange, I hope, any way ,I'm not sure if it was dumb luck at first or what.
Before anybody new what I had.keeping me so sick...
After a sinus surgery, they gave me Doxy for 5 days..I called ,said it didn't feel right and she changed me to 150mg, Rifampin.
I less than 35 hours I felt NORMAL me pop out.
That was 1st time in 2 years of searching for answers.
Then her five days script was done and sure enough I was down again. It took them 7 days to decide who should give me more.. Then I was UP again....
I say again this was in the early days....I took that med. for some time. I thought this is it... Not..
They were then sending me to infectious disease doctors,, So they started Rifampin at 300mg bid. Did it for 6 weeks with a label of latent TB.
My story just goes on..
You are with a good doctor and if this is pretty new ,it could be something else than Rifampin.
If you're on ANY OTHER DRUGS in general, Rifampin makes them ,something like half of what they did for you before. So if you are on Valium 5mg, now it's 1/2.or Estrogen etc..it does this to most meds.
That might be some of issue.
This illness makes you feel, horrible, lonely, rejected,sick, brain fog, pain,,it just goes on.
For Tindimax I still have to start with 1/2 for 3 days then work to my 14 on days...
First time I tried it I went limp next morning. Talk about scarry.... It looks like you caught it early ,compared to so many of us...
You might need to ask her for something for the rough spots.
All I know is that if you did catch it early and you have loving help at home and you do what she tells you ,you have a good chance of feeling 80% plus in several months.
Of course there are no gurantees ,but your chances are so much better than finding out 7 years later.
The other thing ,,,NEVER-----EVER Take steroids, shots or otherwise..It's gas on this disease, I know.
Excuse all my brain fog writing..part of it...LD,
Many are here to help and some lovely people who are well stayed on to do so....
middle of night prayer line 1-800-759-0700.
I used to call them nightly.
I've been sick 7 plus years, self treated as could until shots in 2010,then crashed, Diagnosed Aug. of 2011.
Different treatment now, have seen some progress, long, painful and slow....but forward
I love your user name. I believe that prayer does work. Lean on God and let him help you get through this.
When I started prayer, reading the bible, going to church every sunday, listening to christian music it has really reduced a lot of my anxiety about this disease.
I have two strains of babesia (babesia microti and babesia bigemina), bartonella henselae, lyme, mycoplasma, EBV, and HHV.
It feels like it will never end for me sometimes too. I am going on my fifth year of treatment. I have had the horrible head pressure headaches throughout all 5 years.
It gets worse when the lyme gets hit really hard. I also have the whole pituitary/hypothalamus thing going on or autonomic nervous system dysfunction and I don't make ADH (antidiuretic hormone) which causes me too pee out all the liquid I take in.
I can't sleep well without 2-3 different meds everynight. However, with all of this I know God loves me and has my back.
I know God loves you too and has your back! Trust Him. He will bring you through it all.
Believe that He cares about you and He will never let you endure more than you can handle. Many times, I just felt like giving up but don't because He has anwered my prayers.
By the way, I have prayed about each doctor that I see and He does answer prayers! It amazes me how He has been on this journey along with me even when I didn't feel His presence.
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Rifampin alone will make you crazy. I had Severe anxiety and heart palpitations on Rifampin. I had to stop. I later restarted slowly.
It's the illness and all the meds that are making you feel that way. It does pass eventually.
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