I write you guys tonight at the uttermost depths of my depression with this devastating illness. I am a 27 year old male, have been ill for 5 years, and no longer know what to do.

After being ill for 4 years with no diagnosis outside of fibromyalgia, I was finally diagnosed with lyme a year ago by a new infectious disease specialist. My IgM's and IgG's have confirmed this.

I went on Rocephin in December, and got somewhat better. But upon getting off the Rocephin in March, my lightheadedness came back with a vengeance and recent Rocephin doses haven't gotten me back to where I was Dec-March.

I have no idea what to do now and really feel like giving up. The life I have right now is not one that's worth living, in my opinion. My most prominent symptoms are chronic lightheadedness, brain fog, bad balance, tingling, and knee pain. The lightheadedness though is what puts me at the end of my rope. I can only manage to stand for an hour at a time, then the lightheadedness forces me to sit or lie down. I ask you, what kind of a life is that? At 27, when the rest of my friends are working and starting families I am at home with my parents. I seldom leave my house for fear of blacking out behind the wheel or in public.

I guess what is pushing me over the edge tonight is the fact that I just read a lyme article in a magazine that said, "longterm treatment for lyme patients with persistent symptoms is ineffective."

If my med's are no longer effective, which the Rocephin no longer seems to be, what hope is left? There is none. I'll either stay like this for the rest of my life or I'll get worse, right? Neither of those alternatives seems like a better choice than just dying.

Now don't think when I complete this, I'm gonna kill myself because I'm not. I can't promise I won't in the future, but I won't do that right now. I also don't want anti-depressants to falsly cheer me up. I've got nothing to be cheery about.

If anyone can relate to me in some way, anyway, I would love to hear your story. If any have improved from where I am now, that would also be nice to hear.

I just have lost all hope, I've lost all my will. My parents are great and i love them, but I'm sick of being such a burden on my family, both financially and emotionally...and for what? My parents spend thousands of dollars on Rocephin and I'm still sick. It just doesn't seem worth it anymore. They also see me sitting at home all day, and feel that the problem is "between my ears." They know I have lyme, but I don't think they understand how debilitating this lightheadedness is for me. How can I get and keep a job if I can only stand for an hour? How could I keep an office job when there are really bad days when I have to be lying down?

I'm just sick of everything, and don't want to go through this anymore.....thanks to all those out there on this website who have supported me all this time, but there is no longer a need to.

Take care all.

Marc
 

Many people don't get well on Rocephin but then do well on long term orals. I'm one of them. I got somewhat better on Rocephin, but wwent down hill when I completed the IV.

I started orals 15 months ago and I'm getting so much better, most of the physical issues are gone and my brain is functioning better too. I'm seeing the light at the end of the tunnel. At one point I resigned myself to just being a live. But that was no way to live so I got off my duff and did something positive everyday that I could.

Many here have similar stories. It isn't fun being sick and alone. This is a place to find info and support.

Tomorrow is a new day, I hope it is a better one for you.

Mel
 

Tracy
 

Check out my website...it will make you feel better, and you are not alone!!!!
http://www.wildcondor.com/condors.html

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Lyme Disease Help
http://www.wildcondor.com
 

We had EXACTLY the same thing happen on Rocephin. Two things: Current thinking is that Rocephin drives the spirochete into the cyst form, where the abx can't reach it. If you don't follow up with tx for the cyst form, you will relapse, badly. Flagyl (tinidazole) are used against the cyst form; also plaquenil.

Also -- after fighting this thing for 16 years, we're finally being treated for babesia. HUGE difference for me. So if you haven't treated coinfections -- you're likely to relapse.

Do you have an LLMD?

There are many other approaches to treating LD, and most people use a variety of them -- rife, herbs, cleanses, ozone, abx, whatever.

Keep on keeping on, and research your treatment options. Remember that the depression is as much caused by the disease as it is by you feeling (very reasonably) sick, discouraged, and let down.

Keep posting, OK? And let us know what you're doing?

 

Didn't see anywhere, that you are seeing a real LLMD for this most complicated disease.

A lot of the LLMDs have found not only that orals and oral combinations work well for the treatment of Lyme Diseae, but, that they actually work better than Rocephin.

It has been proven that Rocephin will send the spriochetes into a cyst, crusted form where they will just wait until it is safe for them to come out of there self-made shell and reek havoc.

I truly believe that me being on Rocephin for 4.5 months (this was before I found my LLMD, who would have not put me on Rocephin in the first place) really set me back in my treatment.

The visit to an LLMD, anywhere in the country, would have been a lot less than you being on Rocephin...for it (Rocephin) is so expensive.

You'll find if you can get to a real LLMD, that you can and will get the correct treatment and you will be on the road to wellness.

Am I well? NO, but, I am better and no longer bedridden as I have a lot in the past.

Does it take awhile? You bet cha.

Glad you are not giving up at this time. You can and will get better, but, it takes someone, a real LLMD, to get you there.

If you are not seeing one and want to get better, I'd highly suggest that you find one.

Several patients that post here from you area are seeing my LLMD, www.drcharlescrist.com and have gotten great results as well as many having fully recovered. Remember it is taking me longer, as I believe that I was set back by my being given IV Rocephin in the first place.

Rocephin is not a cure all. And, just because it is in the form of IV doesn't make it better. For if you are given IV Rocephin without a cyst buster during or immediately after you stop the Rocephin, you will not get better.

So my advice to you is to find a real LLMD, not a doctor who says he knows how to treat LD, but, one who is recommened by satisfied and progressing toward wellness, customers (patients) AND, this is important, that s/he is a member of www.ilads.org

Good luck and know that you are being prayed for.

Also, if you haven't seen these links, they will be of great benefit to you to read and study them.

Tincup's Links for new LymeNet Members:

http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Also, this one will help you to learn how to do a search.

Dan's post on how to do a LymeNet search:

http://flash.lymenet.org/ubb/Forum5/HTML/000464.html

Oh, and one more thing, please let us know that you are reading the replys to your post. You can do this by clicking on the Post Reply button that is at the top and bottom of this page.

Thanks and again Welcome back to LymeNet.

Rosemary
 

Im 28. We were identical in symptoms. I beat them, inclduing that lightheadededness, vertigo, off balance, etc. I lived it, I SURELY symphathize, trust me!

PLEASE get a LLMD. You also sound like you have babesia... im no doctor.. just throwing that out there.

Have you posted in Seeking a doctor for a LLDM in your area?

JBGOTH- if you are reading, can you send this guy your LLMDS name, since I know you are both in Florida?

I've been avoiding IVs for almost a year for the very reason you are so discouraged. I've been doing only orals, in various combinations, and seeing slow but steady improvements.

The doc and I thought I might have plateaued, so added tinidazole, and I've seen a big jump ahead this month. We are also taking a re-look at co-infections.

I was really sick for 10 years before diagnosis. I'm still seeing improvement. Don't know if I'll make 100%, but I'm so much better now, I could just about live with this.

Minoucat is right, many people do well on various adjunctive therapies. You can add them in as your budget allows, but almost anything is cheaper than rocephin!

It's worth it to see a REAL LLMD!

BarelyBreathin, if you want the name of some doctors in CA, e-mail me. Lots of folks from your area come here for treatment.

Sonoma County Lyme Support
[email protected]
 

Prozac worked great for me but the side-effects were not so great.

5-HTP is a natural antidepressant that is cheaper, with no side-effects and works well for me. I get it from the health food store. You may want to give it a try.

Those infectious disease docs don't usually know how to treat Lyme. For example, you need to take orals with Rocephin and after stopping it. You really need an LLMD.

Also, remember, you can't believe everything you read. Just because someone says
"longterm treatment for lyme patients with persistent symptoms is ineffective."
does not make this statement true.

I've had Lyme a really long time too, but with proper treatment over the last two years, I am 90% or more better.

You are much younger than I and age plays a significant part in this treatment.

I'm wondering if you can find a doctor in Florida who would work with a LLMD somewhere else. The LLMD can point your doc in the right direction for your treatment. It has been done before. Please consider this...maybe your parents can help you.

As a parent, I can promise you I would do anything for my children; you can't know that unconditional love until you are a parent. As their son, just accept their generosity and remember to reciprocate when they are old! LOL

---Nancy

 

How ya been doin since you posted this question?

rosemary
 

That is not a good statement and I hope he was asking for our help and not do something drastic to relieve his situation.

Has anyone been in contact with Marc?

Please let us hear from you Marc!!! We care, we really do.

Rosemary

Please, again, let us hear that you are ok.

Rosemary
 

You out there?

We are concerned about you....

Please let us know.

Wow.....what an amazing outpour of support from all of you. Thank you all so very very much. I am extremely sorry I haven't replied and I can understand by the nature of my post why you would be concerned.

It's so wonderful to know there are people out there, like me, that care. Believe me, I will lend a helping hand when I am knowledgable enough about this illness to do so.

There are two reasons it took me so long to reply. One, my pc shut down the day after I posted, and secondly as you probably know, we were hit by a massive hurricane this weekend. We just got the power back on an hour ago and this site was the first web page i went to

We incurred some minor damage to our property, but overall we feel very fortunate.

Back to lyme.....I was at a very low point when I wrote that. I am still at a low point, but with the prayers and well wishes of all of you, I will get myself out of these depths soon.

I do have an LLMD in Tampa that's very highly regarded by the name of Michael Cichon. I failed to mention in my 1st post that I was on Flagyl along with rocephin from dcember-march. I apologize for that. As I stated in post # 1, I got to the point with Rocephin where I didn't feel it was helping me anymore.

Dr. Cichon has now switched me to a new drug called Ketek, an oral med i take twice a day for 5 days a week. After the 5 days of Ketek I have 2 days of Flagyl then repeat the process. After 2 weeks of treatment I will get a week off.

I saw Dr. cichon this past tuesday in regards to some foamy urine I've been having, and he confirmed my IGG and Igm's show I have a lyme infection that is active at present. He ordered another Igm and Igg for Babesia, which I was drawn for when in the office.

My symptoms change by the day with this beast of a disease. My lightheadedness is now better than it's been in 2 months, but I'm having head pain, which I didn't have before. Do any of you have head pain? It's sort of like a headache in the front, with random pains and twinges at any other random points in my head. What do any of you who have this symptom take to help alleviate it?

Also, and this may be a dumb question, but is it possible to begin feeling better from med's without herxing? From what I understand, Herxing is caused by the toxins released by dying bacteria, so has anyone gotten a little better without getting worse?

I ask this because I've only ever had one really bad Herx, which was my 1st week on Rocephin, in December.

In addition to Ketek and Flagyl, I am also presently taking Proamatine (lightheadedness), toprol (palpitations and lightheadedness), yucca plant supplement, immunocal, and Cemento (cat's claw.) Do you all approve of this treatment plan? Should I be changing my main lyme Med (presently Ketek) once a month to prevent the lyme bacteria from creating immunity? Comments/advice welcome.

Again, thank you all so very much for the unbelievable support. I hope I can repay the favor someday.

 

Please do not give up...and, come here again, and again when you are having those bad thought, OK?

Love your way

Rosemary
 

Alot of people really have coinfections even if negative. me included.

I am glad you posted and let us know how you are doing. I know what you mean about the lightheadedness. I get it so bad sometimes I am totally dysfunctional for days. There truly is alot you can do to make this better and get rid of that symptom. Your Lyme treatment looks like it is going well. Your body is inflammed from the herxing, and the lightheadedness is all connected to that.
My worst symptom has always been lightheadedness, some days I cant do anything because I feel like I have no blood in my head, my ears ring like I am going to faint, I feel like I am spinning and the brain fog is awful I feel like I am on some kind of hallucinogen.
A major breakthough for me was Tilt table testing http://cpmcnet.columbia.edu/dept/syncope/tiltfaq.htmlfor Lyme induced Neurally mediated Hypotension. It reveals the degree of the inflammation that is causing the lightheadedness and you are put on medications to fix it.

Toprol is one of them, I am on Atenolol, but what you may need is florinef. When you do the Tilt table test (done by a cardiologist) they do whats called an Isuprel challenge, this part test if it is your blood pressure dropping, or your heart rate fluctuating, or both, and I have both thus, i am on Atenolol plus Florinef. Atenolol or Toprol works to lower the heart rate to a slower steady rate but it can cause massive lightheadedness if the doses are to high for you, because your blood pressure may be super low when you stand up or are on your feet, in the shower, waiting in lines for even a few minutes.

You have to find out if you have the blood pressure problem, the heart problem of both. They call these vasovagal syncope and neurocardiogenic syncope. It comes from the inflammation of the vagus nerve leading fromt he heart to the brain. Lyme causes the inflammation along woth the co-infections and it can get really annoying and cause anxiety too.

Florinef is used to boost your salt content and keep your blood volume and blood pressure up when you go from sitting to standing. Eating more salt and drinking more water 2-3 quarts per day helps alot. Hot showers are the worst and right after you eat your head may feel all woozy because all the blood is pooling in your stomach and its not in your brain.
I have dealt with this for 3 years and have improved quite a bit on the meds. I do fine in winter when its cooler. The warmer temps, especially in the south make the symptoms increase. See about getting a Tilt table test ASAP and have your meds adjusted accordingly. You may not need the Toprol and that may be whats making your lightheaded if you do not have the heart related component. Midodrine and zoloft are also used for this ...see my site.
Email me if you have questions...I'm the Queen of NMH on here. I have a whole set of links about this on my Lyme links page http://www.wildcondor.com/lymelinks.html
Hope you feel better and please, stay strong. It really does go away and get better.
WildCondor

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Lyme Disease Help
http://www.wildcondor.com

[This message has been edited by WildCondor (edited 18 August 2004).]