Hello, I haven't posted on here often but I check the board everyday. I've been having a real hard time coping with lyme. I got testing done at igenex and the babesiosis came back positive but the lyme came back indterminate.
Sometimes im not sure i have lyme and the deppression of being sick is driving me crazy. I have bad neuro symptoms. I am dizzy all the time, with brain fog. My whole body seems numb most of the day.
My worst symptom by far is my vision. Shadows seem intense, floaters and wavy vision, and visual trails.
I have been on iv rocephin for two weeks with no improvement. I know that's not long, and maybe im herxing, but i just cant see myself getting better.
Im sorry for such a long post. But I have been having horrible thoughts lately and dearly need words of encouragement. Bless you all. Rich
Posted by SForsgren (Member # 7686) on :
Hang in there Rich. If it helps, my Igenex was indeterminate as well but I have Ehrlichia and Bartonella. My Bowen was a 32. So I have little doubt that Bb is an issue.
I have similar problems with the numbness, burning, etc. and also serious eye issues. On the way today to an eye specialist to discuss further. Floaters, trails, etc.
Don't know your specific case, but sounds like Lyme is playing a role. If you have Babesia, the odds are probably pretty good that you have Bb as well, though they can happen independently in some cases.
I have not been on IV yet but likely start next month. I have read of lots of folks that have taken 12+ weeks to respond but then responded well. So hang in there. Also, starting any new ABX can cause herxing as you noted. I just started levaquin Sunday and this week has really suc*ed... Posted by snapper (Member # 7779) on :
Thanks so much Scott. I hope you feel better also.
Posted by snapper (Member # 7779) on :
Scott, Can you also let me know what the eye doctor says. Thanks again
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by SForsgren:
Don't know your specific case, but sounds like Lyme is playing a role. If you have Babesia, the odds are probably pretty good that you have Bb as well, though they can happen independently in some cases.
I agree. You most likely have Lyme as well. Which lab was used? Have you ever taken steroids on a long term basis? The steroids could keep your test from showing up positive.
REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR
1. Recent infection before immune response 2. Antibodies are in immune complexes 3. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls) 4. Spirochetes are deep in host tissue 5. Only blebs in body fluid; no whole organisms needed for PCR 6. No spirochetes in body fluid on day of test 7. Genetic heterogeneity (300 strains in U.S.) 8. Antigenic variability 9. Surface antigens change with temperature 10.Utilization of host protease instead of microbial protease 11.Spirochete in dormancy phase 12.Recent antibiotic treatment 13.Recent anti-inflammatory treatment 14.Concomitant infection with babesia may cause immunosuppression 15.Other causes of immunosuppression 16.Lab with poor technical capability for Lyme disease 17.Lab tests not standardized for late stage disease 18.Lab tests labeled "for investigational use only" 19.CDC criteria is epidemiological, not a diagnostic criteria
Lyme can cause severe depression and going through treatment doesn't help any! Please speak to your dr about your depression. He/she can help.
The road you are traveling can take awhile. Let us support you!! Posted by lesley1954 (Member # 7626) on :
Hi Rich, I'm sorry this has been such a difficult time for you. My 14-year-old daugher is currently on IV Zithromax and Plaquenil for Lyme. The symptoms she complains about most are visual ones -- she sees millions of white lights 24/7, which are especially bad in the dark; she also sees trails behind objects, halos, shadows, etc. Other symptoms have included chills, dizziness, fatigue, tinnitus, sound sensitivity, neck and back pain, and heart palpitations. Depression was one of her earliest symptoms -- soon after she became ill, but long before she was dx with Lyme. She took an antidepressant (Effexor) for about 6 months, which definitely helped lift her depression. Although the depression is probably linked to your illness, you may still want to seek separate treatment for it -- either medication or counseling or both.
At this point, my daughter has been on IV abx treatment for 7 weeks (Rocephin, then Claforan, and now IV Zithromax). Her chills are pretty much gone. Her energy level is much improved and she feels dizzy much less of the time. She has not had any improvement in her visual or auditory problems yet, however. From what I've heard, these neurological symptoms will take the longest to resolve.
Take care and get yourself the help you need.
Posted by snapper (Member # 7779) on :
up
Posted by snapper (Member # 7779) on :
Thanks Lesley, I was wondering if you could keep in touch and let me know how your daughter is doing with her treatment because our symptoms seem so similar. Thanks, Rich
I hope your daughter feels better!
Posted by SForsgren (Member # 7686) on :
The eye dr. said he didn't see any specific inflamation and did approve my moving forward with HBOT for the Lyme in general. No magic answer on the eye floaters, etc. but I have talked to many people that those resolved with appropriate treatment for Lyme.
Posted by Boomerang (Member # 7979) on :
Hang in there, Rich. My hubby complained today about blurry vision again. Hadn't heard that for a couple of months. It lasted about ten minutes and that was it.
Again, Rich.....stay strong and hang in there!
Posted by believe3 (Member # 6216) on :
Hi Rich, You sound just like me. This for me started 4 years ago with blurry vision and dizzyness..I went to eye doctors and had mri's etc. They finally found the Lyme.
My Lyme test was indeterminate as well. But trust me I have lyme and it sounds like you do to.
I get so depressed also. Sometimes I think the only thing that keeps me fighting in this world are my children. If it weren't for them I don't know if I would have the strength to fight this.
It just ware's you down. I have been sick for years and I am just starting IV's.
Like I have been told. It took you years to get sick..It will take you years to get better. Hang in there. You will get through this just like I will...We all will..
Posted by brodiemac (Member # 7232) on :
Hi Rich - my husband feels just like you. For him the depression has been just about the worst thing of all. He has had spells when he has convinced himself that he does not have LD and that his life is over. He too has had some horrible thoughts. They seem to crowd in when he has nothing else to occupy his mind and is feeling too ill to do much apart from sit around.
We have developed a coping strategy. Every night, we sit and talk about what he is going to do the following day. Everything from visiting a friend, to doing the shopping or even just putting the laundry in the machine or feeding the cat. He ends up with a list of tasks - some easy and some hard so that there is always something on it he can do no matter how he feels. When he wakes in the morning, he tries hard to fill his mind with his list. This keeps other things in the background a bit and gives him a reason to get up, get dressed and get moving. He thinks it helps.
Hope you feel better soon.
Brodiemac
Posted by henson2 (Member # 463) on :
Hi, Rich,
I just posted a response about depression in another thread, one called Tired of Trying started by Green Darkness.
Please do read it if it helps.... but stuff like scented bubble baths might not be your cup of tea! LOL. I put in a lot of the things that have helped me. It helps me to know people care and understand.
I wanted to add that like the previous poster, I, too, find it extremely helpful to plan out some things to do and focus on the next day. Know in advance what you're going to focus on, do, someplace to go -- it's been a huge coping strategy for me.
I can't take anti depressants bec. of side effects now - they did make a difference when I was able to take them. I really think depression is part of the Lyme and co-infections.
I took IV Claforan and there was no change I could detect until the 4th week. I've heard anecdotally that sometimes herxes occur in the 4th week.
I would write more but am falling over now, past bedtime! If it helps, find my post under Green Darknesses' thread on Tired of Trying.
I'm really hoping you feel better. Encouragement vibes vvvvvvv
Warm wishes and good thoughts for feeling better soon
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