phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Finally I have the results of Igenex.. Yes positve for lyme, PCR positive, Bart and Babs negative but the doc said you go more on symptoms for those.
We are to talk more this evening, I hope if I can be worked in with a phone consult.
The high positive ANA is caused from inflammation and the doc feels that inflammation is one reason I have problems with abx. But treatment must get started.
For now, gluten free diet, low carbs , anti-inflammatory medicatin, of course abx starting in a low dose..
With this at my age I may get 40% of me back..Will know more tonight.
Very mixed emotions, scared, but at the same time I do have an answer as to why I am so sick. Confirmed by Igenex and a LLMD, not just the western blot I had..
I am so concerned because I am suppose to be keeping my great gran daughter but haven't been able to this week due to the flu on top of lyme.
How much of any normal activities are you able to do with treatment?? I do so want to keep my granddaughter and have some type of life while in treatment..
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
phyl,
I am glad that you finally have confirmation of your illness.
Everyone is different. It depends on so many factors.
My LLMD always says it's about quality of life.
If you can become 40% more functional than you are now, than that's something to be thankful for.
Don't limit yourself in thinking that you can only become 40% better though.
Also, I find it is not good to set timelines....like thinking I will be 40% better in 6 months or 1 year.
It sounds like your LLMD is guiding you well....gluten free diet, low carbs..etc. It really helps to completely remove sugar cane(often called evaporated cane juice, dextrose,etc) and high fructose corn syrup from your diet if you have not done that....it's in so many processed foods.
Those ingredients really contribute to inflammation.
It's good that your LLMD knows that the negative Bart and Babs results cannot be trusted and must go more on symptoms, and that a high ANA is caused by inflammation.
It really helped me to have hormone testing and get bioidentical hormones. That's when I started sleeping better and I had less fatigue.
God is guiding you in the right direction, phyl.
Put your trust in Him and let Him take away your fears.
Hope you get over that flu quickly.
You ask..."How much of any normal activities are you able to do with treatment?? I do so want to keep my granddaughter and have some type of life while in treatment"..
It really depends. For me, I just had some periods of increased flu-like fatigue from die-off.
When I started to have improved sleep and fatigue that really helped. Then when my head and neck pain started to improve that really helped also and gave me hope.
None of that happened quickly, so just push forward since time is going to pass anyways.
-------------------- 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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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Thanks Dekrator, If it had not been for you I would have never proceeded to find a cause for feeling so bad. So all this to you and your prayers.
I am going to do exactly as the doc says but at the same time try to be as "normal" as I can..lol.. Normal with lyme , oh heck what is normal.
I do have to try to keep the little one .
You have given me hope and strength.. Thank you so much..
Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
Bless your heart. My gawd it angers me to no end when doctors just won't listen to us and we KNOW something is wrong, and they tell you it's just you and you're depressed and throw drugs at you to hush you up.
What kind of anti inflammatory drugs are there?
My inflammation issue is probably why I have a hard time with abx's, too. But I do it anyway ( at lower doses ). I personally found Omnicef to be a tad easier to manage than Doxy. Maybe she'll let you try that one?
Keep us posted, Phyl.
And I absolutely think you can get better than 40%. It may just take longer.
Posts: 1142 | From South | Registered: Dec 2010
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
What I was able to scan sounded like good news to me. Glad to hear it.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Hambone, I am not sure what kind of inflammation drugs the doc will have me take. I am going to try to manage it with a gluten free, low carb diet and hopefully otc aleve .. I won't know till I talk to her again. She is trying me on a low dose of ceftin, I think.. I am now taking clindamycin in a very low dose and so far so good. I did the clind. on my own because I was getting another bad sinus infection.
Hopefully will know more after the phone consult.
How are you doing?? haven't heard from you lately.
Posts: 1058 | From VA | Registered: Oct 2010
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posted
Phyl.. that's good that you have a clearly positive test! So many do not have that luxury and then they doubt and they doubt.
YOU CAN GET COMPLETELY WELL! I had this 42 yrs before being diagnosed. That was 10+ yrs ago. I'm doing great!
Think positively!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi phyl,
You are so welcome!
I am just working on pain and stiffness. Trying Rifampin with doxy.
Hopefully we can continue to spread the word to people on the FM/CFS PH Board that their illnesses are likely symptoms of a larger infectious picture, like Lyme, Bartonella, Babesia, etc.
I know they tire of hearing it, but slowly more and more people are finding out it is the truth.
I am so happy that you feel hope and strength!
Keep looking ahead, never look back.
Praying for you as you move forward.
-------------------- 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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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Dekrator, I will have to go back over to the board and maybe help someone like you did me.. Thank you again for keeping on telling me to get checked.
Oh, when I mentioned FM/CFS to my LLMD she said yeh right, there has to be a cause.
Will just tell my story on the other board.
Thanks again, phyl
Posts: 1058 | From VA | Registered: Oct 2010
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Lymetoo, I so hope to see some improvement over time.. Especially the weird anxiety, off balance and all the other symptoms that keeps me housebound so often..
Posts: 1058 | From VA | Registered: Oct 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
phyl,
I think my biggest frustration on the PH FM/CFS Board is that people always attribute all their symptoms to "Fibro" or "CFS/CFIDS" yet they have no idea what CAUSED them to get sick.
They need to keep hearing that they should not settle for a diagnosis like that and they should look for the causative infectious organisms.
It only takes one person to read your post and start questioning if they could have lyme, bartonella, babesia, ehrlichia, etc...and their life could be changed.
I'll see you there as we continue to spread the word.
-------------------- 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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posted
You mean they haven't thrown you guys off yet??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Lymetoo,
Many people have expressed their anger at me on the PH Board for repeatedly mentioning lyme, but I always try to be polite and I just ignore their criticisms...that way no one can accuse me of argumentative behavior and ban me from my mission!!!
-------------------- 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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posted
I know several who used to post here got thrown off that site!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Lymetoo,
Over a year ago, I contacted the moderators of that site and explained to them why it was so important that the Borrelia bacteria should be allowed to be discussed freely on their FM/CFS board because it is a likely cause of those symptoms.
I also explained to them that it is the argumentative people objecting to my polite "teaching" who should be dealt with, not the people following the rules.
Things got better after that.
-------------------- 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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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Hi Phyl,
I am so glad you got some definitive answers. You can get better. There are many here who have.
I had lyme for 20+ years before I was diagnosed, and I am doing much better. It does take time and patience. But you can do it.
It sounds like you have found a good llmd to help you. That is the most important thing right now.
Keep coming to lymenet for encouragement. The folks on this site are the best.
I admire you for your involvement in your grandchild's life. You're a real gem.
You will be in our prayers.
Take care and God bless.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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