Warning Puzzle Pieces: Wanting to be brief, but details are important

Part I Briefly: I was hosting a deer tick (which I thought was a tiny scab in the middle of a big, painful, swollen bruise - right underneath my left knee) for 3 to 4 days. Before I even knew it was a tick, the knee was killing me and my head was suddenly spinning, together with a "falling down to the left" sensation. This began on November 18th of this year. On November 22nd I thought the "tiny scab" was flaking off, and so tried to brush it off and instead - found I had to pull it out and it had 8 legs and crawled on my hand. It left a bright red bite mark with an unbroken pocket of grayish, clear fluid above the red bite. Upon the tick removal, I immediately went to the emergency room.

Got a standard, Quest Diagnostics Lyme titer taken the same day as tick removal, and was prescribed 21 days of Doxy 100 bid. By the 3rd or 4th dose, I was getting a terrible headache and joint pain, impossibly stiff and painful neck, flared up glands and nodes (especially in my neck and shoulders) a sensation of fevers inside many different parts of my body, sweats, chills, and lots of electrical style pain attacks, increasing hand and wrist weakness, and shooting pain attacks in my chest and left side of chin, a combo of nausea, sensation of being stuffed, and reflux - to name just a few of the afflictions. Thought I was allergic to the Doxy and called ER managing MD - and he explained the possibility of Herx thing. Within 5 days, I got a bullseye at the bite site.

Part II - (so sorry - wish this was ALL briefer): Prior to this, my therapist who knows I have pain to the touch, flare ups of increased pain, weakness, and neuropathies, and FULL BLOWN agoraphobia, and derealization/depersonalization, depression, paralyzing phobias, etc. - the kind of "mental issues" that have gotten worse with age, rather than better...as well as an ambiguous diagnosis from an LP (worked up by a neurologist - who is now dead and who leaves no records behind) in 1985 that came back "positive" for an illness in my spinal fluid that he said: "I don't have a name for it because there are so many viruses and bacterias - it's impossible to name them all. You could have it forever just as is, it could calm down and then flare up periodically, it could calm down and never come back, OR...it could either get worse from here - as well as dissipate, return, and then get worse in the future. I can't say." - (reminder: back to my psychotherapist here) suspected and got insistent, that I had 30 year old, undiagnosed, Chronic Lyme Disease (she had it herself and was treated for it with infusions for 2 years. She caught it through intimate relations with her husband who had been battling Lyme for years).

The neuro workup of 1985..was performed because I had suddenly started to get strange patches of surface numbness - as well as loss of strength and the inability to hang onto a coffee cup and eventually could not even write with my right hand. Specifically started with a patch or strip - of numbness, tingling, multiple shooting pains, and weakness on left side of chin. Within days, a similar thing was happening to my right forearm, wrist, hand, to my very fingertips - only more debilitating and preventing of my functioning. Another strip of numbness formed along the top surface of my left shin, as well as on the back of my head - going up on the right side. With the exception of the forearm/hand part - these others felt like STRIPES.

The path this "mystery CSF infection" wound up taking, was one of "relapsing and remitting", and slowly got better for a while after that initial onset. For the next 30 years, I did not pursue further treatment or diagnosis when it flared. I sought pain relief sporadically along the way of my adult life. My aforementioned therapist had been bringing this up to me for the last 6 months and quite frankly, I was not going to pursue it because the after effects of that spinal tap were SO AWFUL for 3 weeks following, I can never do that again. However, SHE was very pleased about my new deer tick event in November - as she saw it as an 'in road' towards diagnosing and treating the Chronic Lyme - she feels I'm carrying. Side note: I had at least 10 Lyme titers in my adult life, and I was told all were negative. However at the time of the neuro work-up (1985) MS was suspected, a brain tumor was suspected...but Lyme Disease was never mentioned and it was something that 99% of us (including MD's) never even heard of around here... in CT.

For those who can bear it (the length and the details of my in depth post) and take this in...I am hoping you can digest this sequence of events, symptoms, and story - to get a clear picture of my history and that it will help tie in the next part which I will write in a few minutes. When I continue - I will be getting into my latest appointments/interactions with MD's, information, including test results, band numbers, and I am SO hoping... that someone, will help me piece this together.

Dismissed,

Welcome back. We told you you would never be dismissed here!

I think when we all voted (that's a joke) we decided you have Lyme. Well you absolutely have Lyme now since you found tick and had bulls-eye. Did you have lyme before? Sounds like it.

Once you start treating I think you will finally start feeling better.

I'm very sorry you have lived a life of illness but you are not alone. Many have been misdiagnosed and sick for a long, long time.

We are also ready for the third installment.

"Disclaimer about the test sucking." LOL. First good laugh I have had all day.

Dismissed,
I am sorry you have gone through so very much and that you were at the ER all night. So awful. No wonder you chose your username.

Unfortunately, I can't help you read tests. I can say that with everything you have shared, you have Lyme.

I think you need to find a LLMD in your area. The moderators can help you do that.

They will also be able to help get you started with herbs which I think you should try at this point.

Are you detoxing and doing diet changes? The very first post titled 'new to lyme' will help you.

Hang in there. You are finally in the right place and with a group who will never dismiss you.

Prayers and hugs to you..

PLEASE do not be embarrassed here! We are all friends and NO ONE here should be judging you, only trying to help. A word of warning though - you may have to remind us that you dont' have the funds from time to time. We have a lot of people here and some people have the funds to do this and that, while others do not. I'm in a slightly better situation, as hubby and I live with our babies (3 dogs and 1 cat) on his disability - I can't get any because I haven't been able to work for the last 25 years and couldn't get disability for EBV or Lyme back then.

Your story sounds a lot like mine. I didn't know what I was dealing with for the first 37 years of my infection, but my body was definitely showing the signs. I was infected for 44 years before I finally had what was effective treatments for me, and I healed, but 2 years later, I got reinfected and I'm back in the fight yet again.

Do what you can do for your diet. Eat as healthy as you can afford to, it WILL pay off. You can start with some less expensive detoxing, as even that will help you feel better. Then, if you wish to use natural products, I would encourage you to write to me privately, so I can talk some things over with you. I receive donated items from time to time from others that have finished treatments, or have changed treatments and they don't want to throw out an "almost full" bottle of whatever, and I've been blessed in that they send them to me, so I can donate them to someone in your situation. This is NOT medical advice, and it's up to you, but I do want you to know that your situation is not hopeless. We are all here to get and give help.

Hang in there. We can help you learn, and heal. We want to help you learn and heal!!!

Dismissed,

I am so sorry you are in this position. Many are and it is heartbreaking.

On the first page of the "New to Lyme" post there is a post by Cajun Girl that has info about prescription help.

On the second page there is a whole list of financial aids for those struggling with medical difficulties. I believe it is the first post.

It sounds like you could be eligible.

Blessings to you. I pray you will find the help you need.

Oh - thanks for the responses, suggestions, and well wishes. Just saw the last few posts. I wish the same for all of you/us. Haven't been on since New Year's Eve Day - forgot to log out too. I don't have a smart phone so I only use computer when I'm actually "on it" - or "at it". I've just been very weak and feel like I was beaten to a pulp (no exaggeration - I can handle daily pain for decades on end), all over my body, since the last time I looked at this board. Will try to be around and be more mentally consistent. I've been all over the place with my brain and losing track of days/time.

dismissed said...
Oh - thanks for the responses, suggestions, and well wishes. Just saw the last few posts. I wish the same for all of you/us. Haven't been on since New Year's Eve Day - forgot to log out too. I don't have a smart phone so I only use computer when I'm actually "on it" - or "at it". I've just been very weak and feel like I was beaten to a pulp (no exaggeration - I can handle daily pain for decades on end), all over my body, since the last time I looked at this board. Will try to be around and be more mentally consistent. I've been all over the place with my brain and losing track of days/time.

I think on most forums you don't really have to log out. At least I don't. LOL, this one has a tendency to make me log in again, after I've been already posting and in the middle of a reply! Your name won't show up at the bottom as on line, after you've ceased activity for a period of time.


Let's see if I can come close to describing how you feel when you say "beaten to a pulp". Would falling out of the car and bouncing down the highway sound fairly accurate? How about being beat all over with a 2 by 4? That latter one is common on here, the first description was one I've used frequently.

That is a wonderful, yet heartbreaking aspect about this group. We can identify like no one else that isn't infected can.

People who are diagnosed with Fibromyalgia(correctly or not in many cases) use the phrase 'gentle hugs' with each other Because even hugs hurt, and that is surely true for Lyme and company sufferers often times.


So gentle hugs.

Oh, and by the way, I am have some success on that beat up all over feeling from using a tincture herb called Japanese Knotweed. So far it's helping more superficially, which I think is from it calming inflammations.

I still get sharp, surprising pain in my upper right arm when someone hugs me hard, though. But it's just a thought. You need to take a liver support with it, and I take another tincture called Milk Thistle. Milk thistle is a well recommended Liver support. I started with 2 ounce bottles each and they cost me about $36 with shipping. I've gone through the Milk Thistle once, it took me a few months, and I re-ordered, but still have plenty of Knotweed to go through.

I'm a chicken about doing to much all at once because of what I went through with the Doxycycline, and I need to be a little functional. I did not know about de-toxing like I should have, and didn't do any of it, or it would have made that a little easier.