posted
Hi, I have a friend who is VERY ill. She is so sick that she is bedridden and absolutely can not get out of bed under any circumstances. She has a current diagnosis of mitochondrial disease which was confirmed via skin biopsy. However she recently has been tested for lyme disease and receieved these results:
ELISA negative
PCR for Lyme Negative (Igenex)
IGM Western Blot (Igenex)--39 indeterminate, 41 positive (but overall result interpreted by Igenex as negative given only one was positive)
IGG Western Blot (Igenex)--34 positive, 41 positive, and 58 positive (overall result interpreted by Igenex as positive)
CDC Western Blots IGG and IGM---Negative
However her primary doctor who visits her in home is not a believer of chronic lyme disesase. She is looking for opinions on where to go next with these results. Are they worth looking into further? Are there any llmds who might be willing to talk to her over the phone, since she can not leave the house? Please help me help her by giving any advice you can. Below are some questions that she also had. Thank you for any help you can give.
Which co infections should be tested? Should the original tests be repeated for consistency? My other question is whether it is possible to have been exposed to Lyme where I develop antibodies to it, but then never become symptomatic?
Posts: 49 | From Minnesota | Registered: Jul 2009
| IP: Logged |
posted
I believe any bands being positive is Lyme for sure. She needs to find a LLMD. Dr. W in denton would probably talk to her on the phone. IM me if you need his name and phone number.
posted
If she was recently given a vaccine she could have a vaccine injury. Mitochondrial disease is common is autistic kids who are also victims of vaccines.
Posts: 499 | From Indiana | Registered: Oct 2007
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
Here is info from that link (much more that I left behind!)
The following is a brief explanation of the test results. Again, each band is an antigen complexed (bound together) with an antibody made by the immune system, specifically for that antigen (part) of Borrelia burgdorferi
39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.
58: Heat shock protein.
In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.
This is true regardless of whether it is IgG or IgM..
From 2005: The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.
+++++++++
I don't know why.. but he doesn't have the explanation for band 34 here.. just lists it as very important.
I left out bands your friend does not have.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
With band 34 and 41 positive along with symptoms, I believe she would get a diagnosis.
I don't think she'll find a doctor who will treat over the phone, they get in trouble for that. If she can get in for a first visit, then she can probably do phone consultations after that depending on the doc, she would have to ask.
Since she can't leave the house would her doctor who does house visits be willing to work with an LLMD?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
"Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.
The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track."
---dr c
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
She has one positive test, the IGG WB, and that's all that's all that's needed for a diagnosis.
Many of us never have had a positive Lyme test, due to length of illness and its effect on the ability to develop antibodies.
While most LLMD's do phone consults for patients who live a great distance, I doubt they would begin treatment without first seeing the patient.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
posted
Lymed.. I completely overlooked that BIG detail!!!!
Dr C's response:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result."
SarBear... Please print out the explanation and take it to your friend or friend's family.
Highlight the portions I pointed out.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
I put a post on here earlier answering the questions but it must have erased ... weird. Thank you all for your advice. I emailed this to her, and I will see where she goes from here. As far as her symptoms, the ones that I know about are SEVERE muscle weakness, no motility, and she is on tpn. I am sure there are more, but I am not aware of them. I am hoping to somehow help her, her life is worth it to me. Please keep any advice you have coming, and I will help her as much as I can to follow up these leads.
Posts: 49 | From Minnesota | Registered: Jul 2009
| IP: Logged |
posted
Oh I forgot to mention something that quite complicates the situation, and that is the fact that her primary doctor who comes out to her house doesn't believe in chronic lyme. Does anyone know if there is a support group that she could contact near the Philadelphia,PA area?
Posts: 49 | From Minnesota | Registered: Jul 2009
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
ODG. You mean to say she is not on antibiotics?
I would find a LLMD and she can consider suing.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
posted
I wish I had addresses for the PA support groups. Hopefully, someone here will help you with that.
I wish someone would tell her dr that he could be sued for not helping her. ( won't work, but it's a nice threat )
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
sarbear, go on www.lymepa.org and call the contact phone number there in the 2nd white square in the middle of the page. they will recommend an llmd. feel free to pm me if you have any questions. hope this helps!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
What type of mitochondrial disease? That certainly is not Lyme and many can be severely debilitating. I'm not sold into the Lyme dx at all, but I'd explore it. Did she have a muscle biopsy to confirm her diagnosis? That's the gold standard? Who diagnosed her?
I think we need to hear more before everyone jumps on the Lyme Dx.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
IGG Western Blot (Igenex)--34 positive, 41 positive, and 58 positive (overall result interpreted by Igenex as positive)
Yes I believe it is Lyme.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
posted
Your friend's mitochondrial dysfunction may make it difficult and very dangerous for her to be treated with any type of antibiotic therapy, especially if used longer-term for Lyme disease. While hereditary mitochondrial dysfunction might leave someone more vulnerable to certain infections, treatment could be much more toxic in this type of patient.
Many antibiotics and other medications are toxic to mitochondria. Some of the toxic effects are known, but most remain unknown because of the Crabtree and Warburg effect. This effect occurs because cell cultures are usually grown in a richer glucose media than is found in the human cell. Consequently, the mitochondria of cell lines used in drug development and testing do not have to produce ATP. As a result, it becomes extremely unlikely mitochondrial drug toxicity will be discovered during drug development and testing in cell lines that don't have to produce ATP. That is why antibiotic use in patients with mitochondrial disease is considered very risky.
It's doubtful that any benefits could out weigh the significant inherent risks. Furthermore, it's unlikely one could find a doctor willing to accept those risks, or that this would be a good course of action for her to pursue.
Mitochondrial diseases can be very severe so it would probably behoove your friend to remain with a doctor who is familiar with those types of disease processes and can keep up with the latest research in that area.
Your friend is very lucky to have someone like you who is caring and concerned enough to research avenues for her to pursue. However, before embarking upon anything that might prove fatal, she might consult with other doctors specializing in mitochondrial diseases who could help to advise her of the risks involved.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I suspect she has Mitochondrial Disease/Dysfunction caused from
the borrelia toxins and I would not give up.
I would not be suprised if erythrocyte rosetting was mistaken for mitochondrial disease. Remember we have species of borrelia that to this day they are not able to culture.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
posted
Here is an email that she sent me. It is rather lengthy but explains her history and what she experiences on a daily basis.
---first, please thank everyone for me for their insights. They're all very helpful. Some more background--I have had mitochondrial disease since age 14 (I'm 32 now) and it definitely makes figuring out the Lyme piece of this more difficult. Initially I had GI dysmotility which progressed into dysautonomia (high heart rate, high BP, heat intolerance/cold intolerance). I was functional during this time, going to college, graduating with my RN, BSN.....I fatigued easily, but I could still do everything I wanted to do. In my mid twenties, my stamina started declining from year to year. After infections, viruses, and especially the flu, we would notice a worsening of all of my symptoms (this kind of worsening after acute illness or physical stressors is VERY typical for mito patients)---I started developing muscle pain and tremors in my legs and fasting intolerance following the flu at age 23. Then, at age 27, I got a fungal central line infection which caused a worsening of my symptoms to the point where I would get flushed/sweaty and shake from head to toe just from flushing my central line with 10 cc of saline (a severe autonomic response which is rarely heard of but was a prelude to how ill my body would become over the following years).
At age 28, I got another central line infection and needed my central line replaced---To backtrack, I had had a worsening of muscle strength the previous year and had difficulty walking without my legs feeling like lead when they felt fatigued, but I could still walk with a walker. I walked to the stretcher from my inpatient room into the hallway and went down for the procedure in IR. That ended up being the last time I could walk for six months--the physical stress of the procedure caused an immediate, rapid decline in my energy level and ability to function. Every time I would even try to sit up, I would shake from head to toe, get flushed and then lose muscle strength in all my muscles throughout my body which would then become so heavy (like lead) that I would be unable to lift them for hours to days. Slowly, however I regained my strength and could increase the amount I was able to do. I was hospitalized for six months in a rehab facility, regaining the ability to walk. Within a year, I was walking a mile a day--more than I had ever done before. In December 2007, I spent 4 hours outside in freezing cold weather (an autonomic stressor) and within days, started losing stamina and had more difficulty walking again. By April 2008, I had another central line placed and following that procedure, I noticed my stamina dropping dramatically---I would have difficulty even being functional in my home and would need to rest for long periods following just doing simple things inside. I was still able to leave my home twice a week, but would need to rest on the couch the other days of the week or would be unable to function. By November 2008, I knew I was in a very severe downward slide and it would only be a matter of time before I was bedbound again. By January 2009, I was hit with two GI viruses within a four week period and that was the start the abrupt, severe decline that has kept me bedbound for the past year. I had another HUGE energy crisis that was seven weeks long over the summer that was so fatiguing for me that I couldn't lift my muscles or move in bed, I lost the ability to speak due to the amount of fatigue and autonomic symptoms just speaking two words would instigate, I became hypersensitive to touch and even just making eye contact was extremely fatiguing and exhausting (reminded me of an autistic kid who can't look someone in the eyes).
My muscles often burn (like I have had a work out) just from simple movements in bed. I can only do a bedbath once a week, wash my hair in bed once a month, etc. because they exhaust me so much that my muscles shut down and I can't move and my autonomic symptoms become pronounced. As Sarah mentioned, the GI issues are so severe that I have been dependent on IV nutrition through a central line since age 16. I also have a j-tube for medications and a g-tube for venting/drainig.
Over the Fall, we were ruling out diseases that had never really been tested in me before and I requested Lyme be one of them--just to be sure we weren't just attributing everything to mito, given my doctors don't know how else to help me at this stage. Honestly, I never thought the Lyme testing would come back positive through Igenex. It was more for my peace of mind because I was going on hospice (more for the services and in home support than b/c anyone thinks I will die imminently). Now that some of the results might suggest Lyme, I can't easily get to a doctor who specializes in Lyme for their interpretation. I am too ill to be moved. I become WAY too unstable autonomically (heart rate, blood pressure) and my muscles get so exhausted they become almost partially paralyzed when I am even transferred onto a stretcher and haven't even been moved out of my home. It would be really risky to be transported to a doctor's appt, even by ambulance right now. It could set me back for months---and there is a possibility I may never regain abilities if I am so energy depleted from the ambulance ride/doctor's appt. that it causes more progression of the mito disease. My PCP and my neurologist--both from large university hospitals with large case loads--both come to my home to see me. I don't think there is any doubt that I have mitochondrial disease. The question is whether there is another disease process like Lyme which is causing me to be more severely affected by the mito disease than the average person---although the hard thing about mito is it is a multi-system disease which affects each person very differently. Some people are mildly affected and others are more severely affected. Some progress quickly. Others slowly. For more info. on mito, you can go to: www.umdf.org or www.mitoaction.org You can see there is a lot that overlaps. Since I can't see a doctor in person and my PCP doesn't believe in chronic lyme, it makes sorting out the results of my testing and the next path of what to do very confusing. If my disease progression IS just mito, then I don't want to overtreat with IV antibiotics if I don't need to (I have had several fungal infections in my blood and they can be triggered by long term IV antibiotic use---and given my weakened state, a central line infection at this stage could be extremely life threatening). But at the same time, if I do have Lyme on top of mito and we don't treat, am I allowing the Lyme to make me even sicker, reinforcing my bedbound state? This is all very difficult to sort out and without a doctor who can weigh all of these issues evenly and isn't biased toward one side or another, I feel like I am on my own trying to figure out what is going on.
Thank you all again for your insights. I appreciate them so much
Posts: 49 | From Minnesota | Registered: Jul 2009
| IP: Logged |
posted
Thank you for taking the time to share a bit more background about your friend's condition. The severity of her mitochondrial disease is what I was most concerned by because were she to pursue Lyme treatment, she would probably be every bit as fragile, if not much more so, than the severe ALS patients who have pursued treatment. With setbacks being so severe for her, I can imagine how complicated it is to weigh options, especially when the wrong course of action could cause potentially irreversible harm or might even prove fatal.
I'll continue searching for more info in hopes of turning up something, but so far, I haven't had much luck yet. I'll gladly share anything I find that looks promising.
You are a true friend for helping her to do the research she cannot. It's obvious she is one of those indomitable spirits who inspires those around her with her proactive attitude. You are both in my thoughts and prayers as you search for answers.
Posts: 487 | From USA | Registered: Feb 2002
| IP: Logged |
posted
Thank you all again for your support and opinions on this matter. I can't imagine what it is like to be in her situation ... makes me feel blessed to just be dealing with lyme and not everything else like she is. Please feel free to pm me with any additional information that you think may be helpful to her.
Posts: 49 | From Minnesota | Registered: Jul 2009
| IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
Her doctor needs to be informed and doesn't matter what he believes, Chronic LD is very real and effects millions. If possible she needs to get him to read this (2 pages) and possibly call ILADS (there is a contact link) to learn more about Tick Borne Diseases from this organization of Lyme doctors. There is info available here for doctor's, brochures, etc.: http://www.ilads.org/lyme_disease/about_lyme.html
I'm so sad to read this story. I really hope your friend can find help, and she is so lucky to have you to research and advocate for her.
My opinion is, with a positive Igenex test for Lyme, she really, really needs the opinion of an LLMD contributing to her overall treatment.
Most non-Lyme-literate doctors not only don't know how to help the Lyme and will ignore its presence, but will also ignorantly do things that actively make it worse, like treating with steroids.
I have to drive 9 hours to my LLMD, so I have no idea how you could convince one to make a housecall.
Maybe you could get an ILADS LLMD to at least consult with her local doctor over the phone, and advise him about what to look for and how not to make it worse?
I'm not sure how you do that with a doctor who is not receptive. And I'm not sure how it could be worse.
I am not questioning the mitochondrial diagnosis, because I don't know anything about that. I have read about people being as sick and disabled as your friend, with similar symptoms, caused by Lyme and coinfections.
IF Lyme were an initial cause of her mitochondrial disease, then addressing it somehow would be key to her healing. If not, then it is likely to be a major complicating factor.
People have had Lyme sometimes for decades before being diagnosed and treated, even if they were extremely ill the entire time and visited dozens of "reputable" doctors.
Regarding your other original question, on whether asymptomatic infection is possible, I'm not sure, but Lyme is only diagnosed if you have symptoms, since it is diagnosed clinically.
People are treated until a few months after their symptoms go away. There is no test that proves it is gone.
It is difficult or impossible to say for sure when Lyme bacteria are or are not present somewhere in the body.
Some people have their symptoms resolve, live normally for several years, and then have a relapse.
Others don't realize they are infected until they have been sick for years, but later recall a tick bite or rash from the past.
Therefore it is possible to have the bacteria lurking somewhere in your body without having obvious symptoms.
If you don't have symptoms, then you don't have a problem to worry about. In my humble opinion, neither testing nor treatment is useful if there are no symptoms.
Best wishes to you and your friend.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
| IP: Logged |
karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Did you do a Fry test for the blood smear and especially for the biofilm?
The biofilm picture might show dangerous protozoans or other things.
Posts: 1834 | From US | Registered: Oct 2008
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Maybe this will be the case Dr. K takes on. Doesn't he do charity work for those who really need help?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
posted
But he would have to go to HER. Not sure he would do that.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
I was housebound and they said mytochondria dysfunction. I did tolerate 1/2 flagyl a day, sometimes more. Was like a miracle. Fry found in biofilm dangerous protozoan which elevates band 41. I can only use very low dose. I am now advised to take antimalarial and mino. Fry test could be sent in.
Posts: 1834 | From US | Registered: Oct 2008
| IP: Logged |
Do you know whether or not they might have said yours was acquired ``mitochondrial dysfunction'' as that mechanism is understood in the CFS and Lyme communities, or an actual diagnosis of hereditary ``mitochondrial disease'', which is confirmed by many tests and biopsy.
There is quite a difference because one is due to hereditary defects within the mitochondrial DNA (mtDNA) and/or nuclear DNA (nDNA) iand s permanent and progressive, while the other is much less severe and may be transitory. Mitochondrial dysfunction as may be related to LD & CFS has been described by CFS researchers Bell and Cheney for those interested in researching more.
On the other hand, ``Mitochondrial Disease'' is not a diagnosis that is given out lightly, but the patient usually suffers many misdiagnoses along the route until the disease progresses to the point that genetic testing and biopsies are performed that document the genetic defect and include detailed ox-phos testing.
There are many types of mitochondrial disease depending upon where the genetic defect occurs and what part of cellular respiration it affects. In some cases one can try to circumnavigate the damage with supplements to support cellular respiration, but even this support can be dangerous without understanding which genetic defect and where it is located because something benign for everyone else can create a build up of energy precursors in the mitochondrial disease patients that becomes toxic to the cell and worsens the disease.
Like Karen, I've also been diagnosed with ``mitochondrial dysfunction'', but that is very different from genetic ``mitochondrial disease'' because my own was understood in the context of CFS and would not be applicable to this woman's quest for answers. I have also been bedridden at various stages of my illness, but because my underlying cause was due to infection, toxins and cytokines, and not to genetics, so I recovered. Unlike this patient, I haven't had to depend upon intubation for nutrition since I was a teen, or ventilation for breathing support, all of which further complicates the clinical picture.
Before we pass along advice or assure another patient that we know someone else with their particular illness who has recovered, it may behoove us all to take the time to read up and try to understand the mechanisms underlying their genetic disease. That is more important because this is a patient who is intubated, bedridden and on a ventilator to assist breathing has a documented illness about which much is understood.
I have been looking everywhere to try and locate examples of patients with confirmed biopsy positive mitochondrial disease who have responded to antibiotics or other treatment and, as of yet, I haven't found any. A Lyme pediatrician did treat one teen with ``tentative mitochondrial disease'', but that diagnosis was never confirmed with genetic testing or biopsy and their symptoms were not even remotely as severe as this what this patient suffers. So far, I have found not one single reference or citation that might apply. I have even been combing the medical literature to see if anyone has used stem cells or other treatments successfully and have found nothing. Even in experimental animal models stem cells and bone marrow transplants have not been successful.
As others have pointed out, it may be very difficult to find an LLMD able or willing to travel to the patient who cannot even be safely transported by ambulance to try to treat with medications that can be toxic to mitochondria. It would be great if her doctors didn't have to worry about losing their licenses if they thought outside the box, but I imagine that isn't nearly as much of a concern for them as the hesitation to do something that could create an unrecoverable setback for somebody they have grown to know and care about.
Posts: 487 | From USA | Registered: Feb 2002
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
When I read posts like these...all I can do is give thanks to my Lord for my easy journey compared to some others.
I hope Tincup comes along. Can someone contact her? She's the best activist for this situation.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Lonestartick, sorry you are having such a horrible time. I did not do any tests, just my doctor said your mitochondria is not working and that the lupus was on this level. I also did not ask.
Do you have porphyria and then you need not to take the meds from the porph list? I can take very small doses. Now we can get antibiotics and antimalarials for lupus and this is a big plus. I have to take 1/2 tablets, but this is ok.
I am donig so much better after treating the protozoan, so I am almost sure this was at least a big part of the problem. Can shower and even wash hair. But I remember these times.
Never give up. Fo me the Fry test was very important.
Posts: 1834 | From US | Registered: Oct 2008
| IP: Logged |
posted
The idea to contact Tincup is a really good one. If someone with biopsy positive hereditary mitochondrial disease has been treated successfully, or if there is a doctor willing to consult with Sarbear's friend's doctors, she would probably know better than anyone who they are and how to reach them. Good thinking, Pam!
CaliforniaLyme is another patient activist who might also know if anyone knows how to get a hold of her. She used to post here, so maybe some of the California patients would know how to reach her since she is still an activist, at least when I met her at a west coast conference a couple of years ago. She was very sharp and did a lot of research and had a lot of connections in the Lyme community.
Thank you Karen for your concern, but I'm one of the very lucky ones who has recovered after years of undiagnosed Lyme and a decade of treatment. I was lucky because my mitochondrial dysfunction was very similar to yours and was strictly related to Lyme, so I was able to recover with Lyme treatment.
It was not due to a severe hereditary illness with a genetic basis such as the one this other patient is dealing with, which is a much more serious and complicated condition than most of us or our doctors have dealt with.
Posts: 487 | From USA | Registered: Feb 2002
| IP: Logged |
posted
You guys are awesome and I know that my friend appreciates all of this. I will wait to her from TinCup if she/he decides to post. Thanks again.
Posts: 49 | From Minnesota | Registered: Jul 2009
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Based on TC's experience and expertize with all this madness....I would trust her suggestions, no doubt.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic