I'm probably going nuts, I cannot figure this out!!!!!!!!!

[havehope25]

First off, I want to say HELLO to all of you! I'm so sorry about this disease and knew it was real from the first time I heard about it (on dateline or 20/20 I forget). I'm also suffering from what I've been clinically diagnosed as Lyme. I'm beggining to not beleive this and it's really putting a damper on my whole life to say the least. I'll try and make it short and sweet and I apologize that it's not a typical Morgellon's story, I have no where else to turn

It all started when I was 18 years old (I'm 30 now). I had a one night stand with this guy and contracted chlamydia, I went to a clinic and got a couple weeks of antibiotics and it cleared up, this is where my story begins.........(fyi this guy was a drug dealer in a very ghetto section of town)

4 weeks after this happened I got this rash on my neck, it looked exactly like a herpes outbreak on my neck. It was a BIG area covered with blisters, very nasty looking. I did not return to the clinic, I was very embarrassed.

2 months later I developed a severe case of vertigo, went to the ER and said it's just an inner ear thing. Ever since this time for 4 straight years I was dizzy off and on, felt crazy, fatigue, malaise, joints ached, neck pains, back pains, anxiety, and a lot more.......

About a year later I decided to get checked out again at a clinic and got an HIV test, and STD test...there was nothing found. I started believing it was in my head, feeling guilty of what I had done etc etc until....

I met a guy and ended up having a 3 year relationship with him...he developed ALL of my symptoms including the dizziness! I thought to myself that it couldn't be there is no way I got checked for everything a couple times.

My problems of dizziness were constant after our relationship ended and so weren't the aches and pains etc. I thought maybe it was my house or environment etc....

I moved to Florida and met my husband (now). He has been getting all of the symptoms too and actually descibes them sometimes better than me. We also get new ones like MASSIVE head pressure, floaters in eyes (strings, flashes, dots, etc) combined with crippling fatigue, blocking ears, dizziness etc etc.

Flash forward to last month.....

I was desperately searching for answers, I thought I had syphilis and got tested many times...negative results. There has been NO explination for either of us with ANY doctor. I got so desperate I searched endlessly on the internet and stumbled across Dr S in Tampa/Naples. It was confirmed I had Lyme even though my Igenex WB was negative I had several positive bands and all of the clinical symptoms. I was exicted to finally get abx even though I truely didn't beleive that's what I have, I figured it would kill anything inside me.

3 months later with scars from surgery and IV meds, I'm in the SAME BOAT! Not one of my symptoms has improved. I dont' understand what is happening to us, all the Dr's think I'm crazy!@@@@@@@@@@

I'm so sorry to post here, however, I know you will all understand because you share an illness that no one beleives ??? ???

Has ANYONE ever heard of anything like this??????

[michelle]

HaveHope25
I Feel for you, and am so sorry you have been dealing with this for so long without finding answers. No matter what we all have it is important to build up your immune system and restore the healthy bacteria in your digestive system. Do your rashes last long and do they respond to treatments of any kind? I can tell you there is no typical morgellons story
We are glad that you felt comfortable enough to share and be apart of this wonderful support group. You will find many that can help you laugh and identify with.
Michelle

[carla]

Hi ,I have heard a very similar story from a guy who lives in london,even his partners developed symtoms.He got it as as a teenager and is now 38.He had been scared it was aids for years and kept getting tested.I will try to get in touch with him if you want.
Is there any chance it`s Morgellons .Lots of us have tested positive for Borrelia .I got mine via a blood transfusion and for 6 years I did not have any fibres or specks.I was just and unwell all the time and also lost some hair...Pm me if you need.You will be very welcome here and everyone is supportive and full of good advice. .When I first got on the net to find out what my illness was i looked at morgellons and thought Thank god I have not got that.It was another year before I gave up on it being scabies and started to believe It was morgs.Love carla xx

[havehope25]

Thanks for the comfort tonite. It gets so stressful it's unbearable. I've been to so many doctors I'm at the point where I cannot see another one, I've been tested for so many different things. I found relief in the Lyme DX even though I didn't understand why I'm "passing" this to people, it makes no sense. I had to beg my PCP to beleive it was Lyme and thank goodness I have the support from my family. I cannot bring it upon myself to tell my family my husband has this "thing" too and a past boyfriend, I tried to tell my mom and she thinks sympathy pains or whatever. These are specific symptoms and my husband describes them specifically without even me telling him everything I feel, it's crazy. Bless you all for even responding, I've posted in several forums without answers or any kind of belief. I have another round of Rocephin & Flagyl ( 2 weeks or so left), I'm pulsing at the moment. Also, if anyone lives in FL I do not recommend any Lyme Dr's here unless anyone knows of a good one that I don't.

Currently, I'm seeing someone in Tampa (not Dr S I didn't like him). This is such a wonderful place, and I'm blessed I found it .

I've been to the ER countless times and panic about those days when I'm so bad I feel like I'm litteraly dying. I cannot go to the ER anymore, they do not help me. I'm sure everyone here can relate. My husband and I have spent hours on end holding hands in bed praying, especially 3 months ago when it felt like my brain was expanding and I was going to die. I'm too young, we're too young to be dealing with this!!!!!! I have to return to work soon and I can't imagine continueing my life this way. I've been feeling this way for over 10 years and each year it's something new.

I really want to thank everyone for listening, it means the world!

You know someone dealing with this in London??? WOW that's amazing, I've done COUNTLESS hours, months, of research and have not found 1 person EVER!!!! I would love it if you could contact him

I'll be hanging around all!! Thanks again

[carla]

That expanding in your head sounds like lyme to me. Is it because Lyme is not meant to be contagious you don`t think you have lyme. carla xxxx

[lindalu]

Hope,
I was talking to a lady in Tallahassee (sp?) the other night who has had lyme. You sound like lyme to me and with long term lyme, it takes long term abx and diet changes. She thinks lyme can be transmitted sexually and she has had it and so has her husband and son. She believes she transmitted it to her son in utero.
PM me and I will try to get her ph # for you.
Linda

[havehope25]

Most people say that Lyme is not contagious and I was told that even though my husband and I have the same symptoms, they are unrelated (by 2 LLMD's) bs bs I've been chatting on Lyme boards, but I guess I wish I can find another answer as it seems it's something else. I guess I thought I would get relief, atleast a little from these hardcore antibiotics. I've been eating very healthy and will try exercise soon. It seems my symptoms magnify upon physical exertion 10 fold.

Michelle: The only rash I get a little blotches on my abdomen once in awhile. The nasty herpes rash was on my neck and I only got it 1 time.

Thanks again for listening

[carla]

I know lyme can be passed to a baby in the womb and i know a lot of people who think it`s passed through sex. It can take over a year to rid yourself of lyme with antibiotics.Long term lyme can take years .
Have you treid the salt and vit c yet? xx

[havehope25]

Hey Carla,

No I have not tried the salt/vit c. Although I do put lemon juice in my water. How is this done?

[lindalu]

lifelyme.org
This is the lady I spoke with. She said that most LLMD's are not all that literate. I would seriously look into the lyme possibility. She will call you and help you.
Hang in there. The people on this site are heaven sent angels. I had read many 'health' books in my days and poured over websites. But, by far, the advice I have gotten here outweighs the info and help I got from all MDs, books and websites combined. I believe there is something to getting your body alkaline, building your immune system (giving it the super boost it needs) using the right herbal products and even doing the treatment steps. It is an all out assault to get well. It took many years for you to get to this point- regaining your health will take time. Have faith- people here have gotten back normal lifes.
Linda