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Thank you so much for taking the time to look at my test results and answer my questions. I know you are ill and it takes a lot of energy to answer questions & type responses on the board.

I did not know that the Mycoplasma Infection was a co-infection of Lyme. How is that treated?
I have never received any antibiotics for Lyme. I asked the LLMD if I could start Salt/C protocol. He said,"No." No explanation was given.

I reviewed my notes. I see that I have a positive viral load. I'm not sure how that to treat that.

Some other tests results:
HME - Negative.
Babesia - Neg.
Bartonella - Neg.
CatScratch - Neg
HGE - Neg (Not sure what HGE is.)
CD-57 was 11 (told that is very good)
B Cells were 10 (normal is 6-29) (Told B Cells make anti-bodies)

I would like any recommendations to some LLMD's (WI, IA, MN, IL, MI or somewhere close to those states)

I also have high out of range test results for Candida (4x the normal for amount for intestinal yeast). I started treating and have been treating for Candida for about 20 years, now (diet, Anti-fungals, Herbals). Now I am told the Lyme suppresses the immune system and allows yeast to proliferate.

As far as symptoms. There are so many. We used to vacation in a heavily populated deer tick area. I had a large (wood or dog tick) on my temple. I wasn't worried at the time because I was told they don't carry the Lyme disease. Guess that's changed somewhat.

I have brain fog.
Relentless fatigue, exhaustion.
Severe muscle pain. At one point I was immobile.
Brain lesion.
Numerous allergies to foods, chemicals, molds, ethanol, phenol, formaldehyde, stores that sell pesticides, clothing, construction materials, flowers, arts & crafts, and many other things I can't think of at the moment.
Allergies to virtually all pain medications
Heart problems
Eye problems (leaking retina, infections, floaters, see tree/branch-like structures without leaves)
Loss of hearing in one ear
sinus infections: numerous
Irritable Bowel Syndrome
Depression
Sometimes right arm/hand doesn't work (extreme weakness). (Physical therapy for over a year)
Extreme Weakness in right leg (In Physical Therapy for over a year)
Skeletal/structural problems
Difficulty thinking, planning,
Unable to drive for weeks at a time
Complicated Migraines
High kidney Creatinine levels
Severe chest pain & spasms of ribcage
fluid on lung
Nightmares
Candida infections/dysbiosis
Insomnia

I'm sure there are other symptoms, but these are the ones I can think of at the moment.
Oh, I had one dr. tell me Lyme burns itself out s what? I don't think someone would say that about cancer or other diseases ometimes. Is that crazy or what.
Thanks everyone for your help. I've just got to get some treatment.
Kayda
Hi Steve,

Thanks for your post. I will try to answer your questions:

>Who told you that a CD57 of 11 was good? It is better than 0, but it is not good. Normal is between 60 - 360.

My LLMD dr. told me 11 was very good. I am looking at the test results and see that 11 is "In Range" however there is no "Reference Range." :confused: I also had a Lymphocyte subset panel 1 which shows T Cells, Helper cells, Suppressor T Cells, NKC, B Cells & Lyphocytes to be in range. There are "Reference Ranges" for each of these.


>>The CD57 test is quite specific for Lyme disease, meaning that if it is below range and you are having symptoms that reflect Lyme then there is a great chance that you have Chronic Lyme disease. If you do a search for CD57 and then look at the first article you find then that should give you some good scientific based info.<<

I will do the search and see what I come up with. I had no idea that the CD57 was specific for Lyme. Thanks for the explanation of the test. :) I think this LLMD knows the right tests to order, but I am confused about the non-treatment. :confused: He just says with my allergies to pain meds, he thinks I will develop allergies to antibiotics, will have to stop and then I will be worse off than before I started treatment. The last thing I want is to be worse off. :dizzy:

>>IgM usually means current or recent infection. IgG usually means past infection. However for Lyme disease it is not so clear cut. You say you also have Mycoplasma P<<

So, is it possible IGG could be current? If IGG is past infection, does it mean my body has dealt with it already and it is not infecting me now? Yes, it is true I am positive for M. Pneumoniae AB, IGG my result: 3.20 (1.10 or greater is positive). (M.Pneumoniae AB IGM was negative.)

>>Both of these should be treated with Antibiotics. You say that you have an LLMD and he hasnt given you any antibiotics after 1.5 years of symptoms. Doesnt seem right to me. i think you need a new LLMD. Lyme disease is a clinical diagnosis anyway, even though you have results to prove it.<<

This doesn't seem right to me either. That's why I wondered if I truly have Lyme. :confused: Although, I must say the LLMD was starting to speak about a treatment plan until I told him about my drug allergies & sensitivies to pain medicine. Then he stopped & switched course. I wonder if the Lyme caused my drug allergies. (they have gotten bad in the last two years. Before that, I didn't have problems taking pain meds.) Do you know if it could?

>>EBV and CMV can lead to complications especially in immuno suppressed patients. However if you tested many people without symptoms there would be many that tested positive. I doubt they are as significant as your Lyme and Mycoplasma infections.<<

So, I should concentrate on the Lyme and the Mycoplasma. Can EBV be re-activated?? I wonder if that is why I am so fatigued (inaddition to the Lyme)

>>Good luck, but if I was you I would definetley be looking for a 2nd opinion!<<
Isn't it ironic that here I have a Positive test for Lyme & Mycoplasma and I am not getting treated. :dizzy: Many here struggle to get tested, some never do and yet they do get treatment. I do not really know of any other LLMD's. I am going to call an alternative medicine clinic which I just heard of. They do not use antibiotics. All of this is SO hard to do when you're so sick:dizzy: . It must be done, though.

Do you think Lyme and Mycoplasma can be beat without antibioitics? Will Salt/C or Dr. J's tinctures do it? Antibiotics (for my heart and sinus infections have messed up my stomach/digestive symptoms horribly).

Thanks Steve. I'm sorry this got so long. Looks more like a book!
Kayda
[COLOR="Purple"][B][I]Kayda...you have a positive test...going as long as you have you deffinately have Chronic Lyme....your truly need to start some type of treatment right away....your doctor is sooooo wrong in NOT TREATING you....majority of people with Lyme have allergies to meds. Just because you have problems with pain meds is no reason NOT to treat you for lyme....I know I was on many antibiotics trying to find the right ones...and many different types of pain meds....something is not right in what you are being told...you can wind up in a wheelchair...or have such mental issues you will be damaged for life...OR die....it does NOT go away on it's own...they are bacterias and will only cause you more harm....don't mean to scare you...but it is so horrid this doctor is not treating you!!!!

With the virus's you have majority of people of them in their system...I was told we motst likely get them ehn weer kids and the lay dormint in the body until our immune systems are run down...Once you start treating for lyme and the M. P. the viurs's will calm down...your test are the same as mine...it scared me too...but we all have these in our bodies and wouldn't know it unless we had the test...

Like Steve said your main problems are the two bacterias....Lyme and the M.P. I have the C.P. which is in the same family as the M.P. They need antibiotics to be cured...Or the lyme has the alternatives to fall back on....

I know this is all confusing at first...and you are right about here you have a positive and no treatment...hmmmm....I NEVER had a positive...take that test and get some help soon.....

Were all here if you need some support.....
Hugs to you....
:D [/I][/B][/COLOR]
Hi Kayda:

You can click on the first icon on the lower right to edit. Also, you can go to the first page in the thread or you can click on the name of the thread at the top to get back to the beginning.

Many Dr's claim to be llmd's or get labeled as llmd's if they are willing to entertain treating patients with lyme, but not all approaches make sense. My llmd is an I.D.- often not the best choice for lyme, and I'll admit he is conservative, but after months and months of high dose orals I am now in I.V. Rocephin. I am forced to take a break because of bad side effects, but the plan is to retest my CBC and restart. If I have the same problems again then I am most likely done with this picc and I don't know if I want to go through the process of getting another one inserted.

Was your CD57 done by Labcorp? My understanding is that only Labcorp and MDL lab are reliable for this test. I'll give you and idea on my results. My % of natural killer cells 1 (same as CD57 was 7 and my total count was 81) Normal range is 60-360 and most healthy people have CD57's around 200. Dr. Burrascano says that he likes to see lyme pts with CD57 of at least 60, so in that respect I am doing pretty well. My results are most likely indicative of a co-infection but as of now I only test positive for lyme.

This Dr. M seems to take more of a natural approach with I think is important and once I knock this back to the point where I don't have symptoms for at least two months then I will add either Stephen Buhners ( his book is healing lyme) recommended herbs or Dr. Jernigans tinctures, BUT- it is my very strong belief and I know it is the belief of many of the nations top lyme experts like Dr. Burrascano that lyme is a bacterial infection and it needs to be addressed first with antibiotics. I know there are others who have done well on natural remedies alone, and who knows, they may be right, but I just have to go with my gut.

Frango
JoJo,

Thanks for your quick reply. I really do need support. Just knowing I can count on you (and others here) though helps lift a burden. I've stuggled being sick for SO long, it's almost become a way of life--what I mean is, I hardly can remember what it is like to be healthy!:blob_fire

Is it at all possible my body could have fought off the Mycoplasma or Lyme?? I guess I am still confused about the IGG being a past infection. Does past infection mean it is not active??? OR maybe it doesn't matter. I definitely have CNS symptoms. Last summer, I was hospitalized (major medical center) for two days because drs. thought I had a stroke. Event occured while I was reading a book to dd. Suddenly the words on the page didn't make sense. I had difficulty comprehending when dd spoke to me, I had difficulty speaking. Something very weird happend with my vision. It was like the same scene raced in front of me eyes over and over. I got a headache. Drs. ran every test for stroke imaginable. Nothing confirmed it, yet they couldn't rule it out either. At the time, I asked them to do the Western Blot for Lyme. THey said yes, then changed and ran and ELISA (w/o telling me:mad: ). Elisa was negative. They never told me they didn't do the WB, just said my test was negative and left it at that:mad: . A month later, I foundDr. M who ran the WB. I was SO grateful he ran the right test and thought I was in good hands. :) But, alas, I haven't been treated either. I fell through the cracks with him once before:eek: when he didn't tell me I was positive for Lyme for 5 months. I called twice asking the results. His nurse assured me if anything was wrong, he would call me. So, since he didn't call, I assumed all was O.K. I found out later when I requested my records. Imagine how horrifying that was as I read the results and saw "positive" circled.:eek: When I asked him about it, he said this has never happened to anyone else, so I gave him another chance. Something does seem to be wrong here. I don't mean to "air all this dirty laundry" but the history is important, too. Maybe I will delete this later after you've read it.

Thanks again for your supportive words. I should make those two phone calls now. I'll let you know what happens. One other thing concerns me. Many seem to be treated with antibiotics and just don't get better.....I guess I do not know if that will be true in my case, hopefully, not.

Kayda:wave:
Hi Kayda

Good Luck - i know its not easy.

I was sick for 4 months before I figured I may have Lyme or something similar - mycoplasma, Chlamydia P etc.

I decided to get some doxycycline anyway so I could and try. One doc prescribed me a month at 200mg b.i.d. Within a week the headaches were gone. After 2 weeks when I saw an LLMD I doubled the dose. A few days later and my strange eczema looking rash dissapeared. 4 weeks later and I had a couple of semi-normal days.

The doc then changed me to Amoxi and Biaxin at relatively good doses. Unfortunately I feel I have been sliding since. Is it a Herx, is it the meds not working.....well no one can say for sure.

However, I have tasted some success with antibiotics and I know they did something positive. If things dont improve I assume I will need to maybe go back to the cycline family of abx. I get the feeling I will have to change after the next time I speak with my LLMD. Sometimes you need to trial and error to find whats right for you.

I think its kind of normal that we dont hear enough positive stories. But thats life, how often on the news at night do you hear about the lovely stories that happened during the day. Or even more simply, how often does someone send a company a letter thanking them for the positive effect their product has had on their lives...compared to when it has a negative effect.

People usuaully speak louder when they complain than when the praise!

Although I hope that when I am better to also leave some legacy for other new sufferers I also suspect that I wont be telling to many people about my positive story....why.....because I will be getting on with life.

Please try some treatment. That said, make sure you disclose all your conditions with the person who may offer you that treatment!

Steve





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