HealingWell
Search Close Search
☰

Strange Symptoms

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/17/2015 11:47 PM (GMT 0)

Hello,

 

I originally posted this on the Fibromyalgia forum, but I thought I'd check here too. Been treating for Lyme for about a year with no improvement. Same thing with Fibro. No changes.

--------------------------------------------------------------

Hello,

 

I have been sick for almost 2 years now. At the very beginning I was told I had Fibro but because of many odd symptoms and the fact that none of the Fibro treatments worked, I started seeing other doctors. I have over 30 symptoms. Some of them are strange even for Fibro though. Just wondering if anyone has these…

 

Of course I have the pain, fatigue, sleep issues, weakness etc. Some of the more unusual issues are: a diagnosis of Optic Neuritis (which is generally associated with MS), a blind spot in the middle of my vision for the first few minutes of each day, a condition known as Erythromelalgia (http://www.erythromelalgia.org/WhatisEM.aspx) on my hands, mild Raynaud’s on my hands, increasingly worse tremors in hands and arms and nearly constant skin inflammation. I also have a lesion on my brain that has not gotten worse oer 2 years of MRIs. Also, my sense of touch is greatly deminished. It feels like I ahve a sheet of plastic over my entire body. My skin is very sensitive and everything leaves a mark.

 

I have seen 25 doctors and just recently got back from the Mayo Clinic in Jacksonville Florida. They never find anything in my blood ad they tell me it’s not Lupus. Even the Mayo Clinic says it’s Fibro or something like it.

 

I have tried LDN, Cymbalta, diet changes, acupuncture, various herbs and naturopathy, exercise… Nothing helps and I keep getting worse.

 

Has anyone ever experienced these symptoms?

 

Thanks,

A

Posted 4/18/2015 3:52 AM (GMT 0)
Sounds like you have Bartonella as the primary and dominant infection. Bartonella is gram negative so gram positive antibiotics for Lyme will seldom treat it.

What type of treatment have you done for Lyme?

Oh, and yes, I have Optic Neuritis, my blind spots are on the right side of my vision, had hand and arm tremors, and very dry, flaky skin all over the body. MRIs showed lesions in my brain that my doctor called "brain freckles". My sense of touch has not diminished by parts of my skin has felt sort of "numb" although touching it with a sharp object is easily felt.
Posted 4/18/2015 6:57 AM (GMT 0)
I agree with Healing98, that Bartonella is holding up your recovery. Are you being treated by a Lyme Literate Doctor, one that is associated with ILADS (International Lyme and Associated Disease Society). Lyme complicated by coinfections requires a specialists know how.

And are you detoxing? Details of that can be found in the "New to Lyme?" thread at the top of the forum.

I hope you get some relief soon. These symptoms are disturbing and uncomfortable, I'm sure.
Posted 4/18/2015 7:04 AM (GMT 0)
Have you done anything to change your nutritional deficiencies? Having Lyme or any of the other tick borne diseases can deplete you of nutrients like selenium, magnesium, copper, boron, zinc, manganese, and maybe even lithium. Treatment does you no good if you don't replenish these minerals.
Posted 4/18/2015 8:00 PM (GMT 0)
Thanks everyone.

I have been treating w a LLMD. I have been on oral abx for over a year. For a 2 month span I was on IV Rosephen 3 times a week. I also tried Zhang Herbs and the Bhoner herbs for 2 months each. I am also currently on something called "A-Bart" for Bartonella. I have been taking it for 5 months. I drink detox tea and take epsom salt baths. I drink lemon water.. I take Alkasetzer Gold... I stopped eating gluten.. I take multi viitiamns.. I've tried every tincature and herb available.. I've been doing it all with no sign of getting better. That being siad, none of the Fibromyalgia treatments have helped at all either. I am out of ideas and options at this point. That's why I went to the mayo Clinic. All they could say is that my copper is a little low. Nothing they can do for me though. :-(

Thanks,
A
Posted 4/19/2015 2:34 AM (GMT 0)
Do you have MTHFR issues? If you do then you need supplements such as Methyl B-12 and methylfolate. People with these issues and seems like most of us Lymies do, it's our methylation pathways are blocked and we can't detox properly. There's also 23andme.com, I've never done it but a lot of people have, shows other mutation problems.

To find out more go to www.MTHFR.net
Posted 4/19/2015 1:30 PM (GMT 0)
I had systemic lupus for over 15 years and when I read your post I wondered if that might be your problem. Have you asked your questions on the Lupus forum? If I remember right, there can be negative results for years and still be very sick with SLE.

I am sure the folks on the lyme forum will have more answers.
Posted 4/23/2015 5:34 PM (GMT 0)
Thanks everyone. I was tested for the gene mutation and it was normal. As far as Lupus goes that's the first thing I thought and continue to think currently. I've been tested about every three months for the last two years and it keeps coming back negative. I specifically asked the rheumatologist at the Mayo Clinic if he thought it was lupus and he said no. He is supposedly one of the best rheumatologist in the country, but who knows. So I guess I just have to deal with the symptoms and keep getting tested and maybe eventually they will find the lupus antibodies in my blood after a decade or two.

I'm in this kind of difficult situation because fibromyalgia treatment hasn't helped me and lyme treatment has't helped me and I feel like I keep getting worse. It seems like a pretty hopeless situation.

I have asked my questions on lyme board the fibro board the MS board and lupus board... I rarely get answers anywhere but here. Maybe I'm just very unlucky and I have lupus and MS or a combination of many things. i'm like a greatest hits album of all the stuff that could go wrong with you.

Post Edited (Akkami) : 4/24/2015 2:23:38 PM (GMT-6)

Posted 4/23/2015 7:10 PM (GMT 0)
Akkami - have you herxed on any of the treatments? Do you have some days better than others...or all terrible days?

Have you switched LLMD's ...just to get another opinion?
Have you tried many different antibiotic combos? - including cyst busters?

And, have you treated co infections?

I think you probably have addressed it all...but just wanna make sure.
Posted 4/24/2015 12:43 AM (GMT 0)
Akkami--not that this is much consolation but I remember that on average it takes 5 or more years for some ppl to be dx w/ lupus.

I had symptoms for a few years but they came and went. And even when I did go to a rheumy she said she didn't know what it was. So I had to go to a second rheumy and he said SLE and "why didn't the first doc know this???" (my lyme titers were sky high)


Anyway, just cause you went to Mayo does not guarantee the correct answer. Maybe you could ask around about other rheumys and keep track of your symptoms. There is a checklist of typical sx and if you have whatever amt --not even at the same time-- you likely have it.
Keep us posted!
Posted 4/24/2015 4:31 AM (GMT 0)
Have you been tested for Chiari Malformation (herniation of the brain)?

Have you been tested for CCSVI (causes many cases of MS; chronic infections are thought to be the root of the problem in many cases)?

Have you been tested for Mitochondrial Disorders?

Have you eliminated gluten, dairy, GMO's and artificial ingredients from your diet?

Do you have any mercury amalgam fillings or root canals?

Do you use any chemical pesticides, harsh chemical cleaning solutions, or personal care products that contain toxic chemicals? Check ewg.org for more info on what is toxic in personal care products.
Posted 4/24/2015 6:02 PM (GMT 0)
Akkami--This is to correct my post. I switched "lupus" around with "lyme" in a few sentences. I hope I did not confuse you--I am so befuddled sometimes!

1)my lupus titers were sky high
2) the lupus forum might answer your questions
Posted 4/24/2015 6:06 PM (GMT 0)
I would see my favorite MD - email me for info. You have seen 25 traditional docs I doubt the 26th will be any help.
Simon I great at medical mysteries and will look for things the previous 25 did not. He is an md and a retired from the US Army
There are some docs who are good at mysteries-most just arent.

(edited your post as the rules prohibit including names of doctors)

Post Edited By Moderator (Mister Mike) : 4/24/2015 12:10:30 PM (GMT-6)

Posted 4/24/2015 8:40 PM (GMT 0)
Girlie-I feel awful all the time. No treatment seems to make that better or worse. I am currently on my 2nd LLMD. I am in South Florida so the pickings are very slim. I have been taking something called A-Bart (for Bartonella) for about 6 months. It has not made a difference.

Sueg- Thanks for the info. I have seen 4 rheumeys at this point. I understand that Lupus may take years or even decades to show up on blood work. I ahve seen the checklist you are talking about and I have most of the symptoms. :-(

Razzle- I do not think I hae been tested for Chiari Malformation. My current LLMD suspects I have CCSVI but never said anything about a test for it. I ahve tried all the diets you can think of over the past 2 years. At one point I was only eating organic meat and veggies with pretty much nothing else. I do not believe I have any mercury fillings. I do not use anything that has chemicals in it. I use baking soda and vinager to clean almost everything. My soaps are just made from lye with no sents etc. Thanks for the great questions.
Posted 4/24/2015 8:44 PM (GMT 0)
Thanks for the offer Magoo. It says your e-mail is unavailable currently.
Posted 4/24/2015 9:25 PM (GMT 0)
There is a LD in Clearwater whose wife had Lyme and he got rid of hers.

Also in Lauderhill there is a lady who does hyperbaric oxygen treatments, 954-749-9998, I've heard that helps clear it out.

Isn't the sponaugle center in FL? I am sure that would cost an arm and leg.

I have no way to email you the doctors names that I have, email me and I will send you the info.
Posted 4/25/2015 12:47 AM (GMT 0)
Thanks Revive. E-mail sent.
Posted 4/25/2015 5:14 PM (GMT 0)
Hi Akkami. I am so sorry that you are suffering with an unknown illness.
I wanted to ask since you said that it has been two years of you fighting this mysterious illness, Do you have a history of an insect bite prior to all of these? Have you had any weird rash that comes and goes?
There are so many virus and bacteria that certain insects, ticks, fleas, lices, bedbugs carry. Many of these are unknown to today's modern medicine.
Posted 4/25/2015 8:03 PM (GMT 0)
Elmesanoya- Well I do live in South Florida so I am constantly being bitten by Mosquitoes. I do remeber pulling ticks off myself about 20 years ago, but I didn't start having symptoms until 2 years ago.
Posted 4/25/2015 10:13 PM (GMT 0)
I forgot to answer your first question. Yes I do get a rash, though some might call it inflamation. It ws the first symptom I had. i moves around and only stays for a few minutes. It is not raised but it does hurt sometiems.
Posted 4/26/2015 2:51 AM (GMT 0)
Sounds like Bartonella, have you taken Rifampin, azithromax or Bactrim? Not sure what other antibiotics hit Bart but maybe the A-Bart isn't working for you.

Sent you info about bee venom therapy, a lot of Lymies are finding success better than anything else.
Posted 4/28/2015 8:59 PM (GMT 0)
Thanks Revive.
Posted 4/28/2015 10:01 PM (GMT 0)
I think the rashes have to do with your illness. I live in central Florida. I was seeing Dr. K. Maybe he will be able to help you?
Posted 5/28/2015 2:20 AM (GMT 0)
akkami-I was referring to a doc in St. Louis-he is great at medical mysteries. He test many things most doctors simply dont Your email says unavailable can you make it available?
Posted 5/28/2015 2:23 AM (GMT 0)
PS- has anyone tested?
1. parasites
2. dental
3. environmental toxins
4 delayed food allergies
5 nutritional deficiencies

Something or somethings are being missed-most likely from the list above
✚ New Topic ✚ Reply
12